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.

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.

Wednesday, February 6, 2013

She Was Sent to Rescue Me

Me Dear Boss Lady, you are turning 5 in just a few hours. I am sitting here watch you peacefully sleep. I am thinking back on the last 5 years and how far you have come. Looking at you my heart fills with pride and love. I can not believe you are 5. When I was pregnant with you a good friend of my mother's told me to cherish every moment, and I am so thankful I did. 

You have been working so hard, harder than any 5 year old should. Between all these years of therapies and school days, you seem to be able to still laugh and have true happiness.You never complain about any of the work load that is put on you. You look at everyone in this world with no biased and believe in that equality we all should.  You have this light in you that when you enter a room no matter what you are doing attention is put right on you. You never lie, your honesty is something I admire most about you and how you do not care what other people think.

I am proud of you in so many ways. You have brought a love to the entire family that I did not even think was possible. You saved me little girl. I was lost and when I first met you I found myself and learned how to really love for the first time in my life. You are the reason I have strength. You are the reason I am the woman I am today. Each day I work to be a better person and do great things, because of you. You are the just plain and simply MY REASON and MY PURPOSE. As every year you grow older and older I will still be by your side guiding your light and doing everything and more you need me to do. I love you so much Grace Marilyn make your way in this world, reach for the stars and achieve all of your ambitions. I hope you have a happy happy Birthday, my love.

My song to you Boss, by Martina McBride <3

In my daughter's eyes, 
I am a hero,
I am strong and wise, 
And I know no fear,
But the truth is plain to see,
She was sent to rescue me,
I see who I want to be,
In my daughter's eyes

In my daughter's eyes,
Everyone is equal,
Darkness turns to light,
And the world is at peace,
This miracle god gave to me,
Gives me strength when I am weak,
I find reason to believe,
In my daughter's eyes

And when she wraps her hand around my finger,
How it puts a smile in my heart,
Everything becomes a little clearer,
I realize what life is all about,
It's hanging on when your heart is had enough,
It's giving more when you feel like giving up,
I've seen the light,
It's in my daughter's eyes

In my daughter's eyes,
I can see the future,
A reflection of who I am and what will be,
And though she'll grow and someday leave,
Maybe raise a family,
When i'm gone I hope you see,
How happy she made me,
For i'll be there,
In my daughter's eyes

Tuesday, February 5, 2013

Three Working Spokes

The Boss is laying down and Super Dadda is doing Daddy things like paying bills. We had a moment tonight and it was something very exceptional. Boss has trouble with emotions. When she is over come with any emotion her little body does not know how to process it and she immediately resorts to hitting...me usually. At dinner she was woofing down her GF mac n cheese. Super Dadda and me were standing in the kitchen area and we hugged and just did a natural sway, kind of like dancing. I looked over at Grace and she was smiling, it was a smile of admiration and dignity. I looked away fast because I knew she would feel embarrassed by me catching her have an emotion. I did not look away fast enough, she saw me and bee lined in my direction and punched me in the stomach.

Super Dadda and me went to lunch today and were so refreshed when she came home. We talked about things other than Autism. It was nice. We had a really good after noon with her,too. She was rather compliant and had minimal behaviors. When I sat down and decided to share this with you all, I realized the energy between Ernesto and me really do impact here. Him and I are always good, but today we were extra extra and it really reflected on her. We both were there with her for dinner, bath, and bedtime. She was so happy and loving every second of it. My little Boss. <3 We were being really silly at dinner and took this picture.

Even though our kids have disabilities they are still in tune to our emotions and energies. Sometimes I forget that even though she can not express certain things, she still may be feeling them in her own way. I know now I have to be more aware of my interactions with Super Dadda in front of her, because she IS watching and she IS feeling. Maybe not in the way we do, but it is there. It is there for all the super kids, they just process it differently. I will tell Super Dadda I love him more often, hold his hand during a family movie, and we will like we always have snd show the utmost respect for each other.

My parent trainer described a family unit as a bicycle wheel. Each member of the family is the spokes. We have three spokes, Boss, Super Mama, and Super Dadda. If one spoke is off or broke the wheel can not function properly. It makes so much sense.

Since I can not find a quote that I like, I leave you with this song. A song Super Dadda and me identify with for our journey with the Boss.

Monday, February 4, 2013

Unexpected Co existence

I saw a Muslim woman today walking across campus in the far distance. She was timid but held her head up high. She had the whole head dressings and the draping attire, although her face was exposed. As her clothes blew in the wind I watched students walk by her and stare as hard as they could. Was it out of ignorance? Some I can say fully were. Some people just stare at things or people that are different. I have learned not to stare. Over the course of my life I believe you look ignorant doing so. 

I found her to be so strong to attend a predominately American Cultured college as a Muslim woman and hold on to her religious beliefs. Brave. Like my daughter Grace, so brave to be herself and not care what people think. I envy this about Grace and this particular Muslim Woman.

As I slowly approached her, I had a thought. I knew at that very moment how she felt. To feel different. To feel misunderstood. To feel out of place. One look or glance her way people automatically form assumptions or a quick judgement on her. It is how I feel when Grace scripts in front of people I do not know, or when she is over stimulated and melts down in public places, or when she throws items across restaurants. 

As I came closer to her, I mustered up confidence which I lack in these types of situations. We walked parallel towards each other, my nerves set in and I inhaled to slow my heart. I smiled a smile of understanding and care. I opened my mouth and said, "Can it get any colder out here?". Her smile grew big and I saw her shoulders relax. We both laughed and just passed through. It was the smallest interaction. But it made a difference in her day and a huge difference in my life.

I never in a million years thought my experience and life with Autism would co exist with a Muslim woman passing by me on a college campus. In the course of 3 or 4 minutes my view on life is a little different and my heart is bigger.

"Good judgement comes from experience, and a lot of that comes from bad judgement"