WHAT'S LOVE GOT TO DO WITH IT?

EVERYTHING!  Love is not a word to say it is an action to live and a state of being.  So many people have said to me: “Don’t you know I love you?”  Just the need to ask that must indicate that person was not living or showing it.

I am certain that in your lifetime you have different people teach you about love.  Some people may have taught you that you have to earn their love.  Others may have shown their love more freely.  Family is the first environment that we learn what love is and isn’t. 

At an early age I was aware of this state of ease around some people.  I was relaxed, free to make mistakes, free to laugh out loud, free to not have to be perfect.  I never had to earn my love from my grandmother by being a perfect student or being the prettiest granddaughter.  Mima was the first person to show me what love is supposed to look like. Perhaps, that is why I spent almost every waking moment with her. 

Decades of allowing people to show me what love isn’t; I have come to a place in life where I realize that I am the problem.  At what point did I believe the lies that I am less then?  When did I become less than deserving of kindness, respect, compassion, understanding, mercy, and grace? How come I have settled for disrespect, abuse, mistreatment, and neglect? 

Words that have been spoken over us aren’t what binds or frees us; it is our belief in those words. 

WARNING:  Be prepared to walk alone for a while when you finally make a stand for and take notice of yourself and the people that surround you.  It is a long process of letting go of those who drain every ounce of joy in your soul and one day finding and letting those people in who deserve your heart, your kindness, and your love.

Besides, my Mima, I have had only a handful of individuals  who have displayed the true action of LOVE:  my sons, Ryan, Christopher, and Scotty; my future daughter-in-law Brittany, and of course my dog Ellie :)  They taught me that they will always love me even when I fall, fail, and make mistakes.  I am loved despite my shortcomings.  I feel safe in their presence to be myself, to laugh out loud, and to be silly.  Perfection NOT required.

INCLUDING MY SON

Why as society and human beings have we preferred and accepted separate but equal for individuals with developmental disabilities?  I have painfully been privy to the practice of self contained classrooms, separate schools for children like my son and ignorance in the community.

This has created much anxiety in me that goes beyond any fix that may come from a pill.  As a student of life I have been forced to face the reality of “being different” is not acceptable.  In fact, we must conform to what our immediate environment dictates us to become in order to “get along” in society.  As a little girl I inherently was aware that mistreating a person because of their skin color or accent was wrong.  Even though everyone around me said words that I will not repeat here when a certain person of an ethnic background walked by and the R word often said for the kids down the hall in school in that classroom that nobody wanted to walk by.

I volunteered much of my free time in that classroom.  I engaged in conversations with these students.  I often wondered why the teacher was allowed to talk to them in that tone of hers.  I would observe twitches and head swaying whenever that teacher spoke to or about the students: as if they were less then:  LESS than any of us, less than deserving respect and kind words spoken over them.

These students were often called Retards or Botards in my school within my circle of friends.  I would correct them and tell my friends their names and what they liked.  I tried to humanize the “special ed” students to my inner circle.

Many years later I am doing the same for my son, Scotty.  How can I humanize my son to a society who looks at him as “less than” or not worthy of inclusion.

INCLUSION is a hot topic in education.  WHY? 

I have given this much thought and cried many tears over this.  If we as parents, students, teachers, administrators, society, human beings don’t believe that inclusion in an educational setting from onset is not a given right for any person born with  any form of difference, we will certainly not allow inclusion of these same people into our world.

Parents of ‘normal’ children do not want the distraction of having any special education students in the classroom with their child.  Regular Ed teachers do not want them in their classrooms.  Let’s face it all this back and forth re. Pros and cons of inclusion is a bunch of Bullshit used to disguise the truth behind the mask of special education segregation.  Why is my son’s education any less important than your child’s?

Special education should not be exclusive or a separate entity from any school system.  All of our children need an education to help them become successful in life.  We all require some form of special education to meet our needs as individuals.  Teachers and administration hide behind labels and claim not enough money in the budget or not enough support systems in place to consider full inclusion for every or any student who learns, looks, acts differently than the expected norm.(note: I am currently studying for my doctorate in education-so I am not just casting stones)

It is easier to hide in your own ignorance and fear then to reach out and make a difference and change how we look at people like my son.  I am not asking for just tolerance.  We are requesting, NO demanding full acceptance in every area of his life. 

Whatever happened to the golden rule of treating others as you wish to be treated?  When my son says HELLO to you, have the respect for him to say hello back.  Being rude and unkind to people like my son is acceptable behavior in our society even within our own families.  This must stop!

It is easier for us to hide or ignore differences.  I am ashamed of so many people when we are out in our community.  However, I am never ashamed of Scotty because he is always himself, pure, innocent, true to who God created him to be.  We ‘typical’ people would benefit from Scotty and others like him.  Living a non authentic existence is exhausting.  Scotty is Scotty with NO apologies.

The moment we don’t question if my son deserves to be in a ‘regular’ classroom will be the moment we start to move forward with full inclusion into the world.

I plan to make a difference to help him be included in this world.

. 

NOTE: I included this picture for this piece because Scotty is fully included within the loving family of the Echelon and 30 Seconds To Mars...these men of Mars and "fans" show true acceptance and love for my son..now to get the rest of the world to follow suit!

Welcome To Holland: A poem I Hate

I had signed on and committed to writing in my blog for 31 days straight from July 1-July 31.  I seemed to have forgotten July 2nd & 3^rd.  Perhaps I am in a time warp and didn’t really experience those two days or I had nothing great to write about.

Awakened by my dog way too early this morning, I was on Facebook catching up on all my fellow Angel Parents posts.  I came across this link that if I wasn't sitting next to my sleeping angel, I would have leaped off my bed with joy and gratitude.

http://not-hothead-yet.livejournal.com/703116.html

This is a must read to get a better picture of what it is like to be a parent of a special needs child.  My friend and fellow Angel Mom; Debbie Rankin Aimers had posted it.

It was such a release of emotions for me when I saw this and other parents believe and feel as I do about the “welcome to Holland” poem.  Honestly, I hate that explanation of when you are told your child has special needs/disabilities.

Welcome to Holland"

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this: When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. - Emily Pearl Kingsley

The first time I was told some version of this poem was in April of 2003 at my son, Scotty’s one year old well visit.  We just had spent 10 months of tests, blood work, and many specialists later to put a reason, a name on what was causing my son to not meet his milestones.  The pediatrician told me this lame story about Holland and Italy and that my son has Cerebral Palsy (which we know was wrong. Fast Forward to 2009 he has Angelman Syndrome).  The doc tried to tell me that loving this child will not be easy. That Scotty will never do what his older brothers can do.  He will never be able to run and play with his brothers.  He may never walk.  Most likely Scotty will never eat on his own and we really have to think about a feeding tube.  Not one word was positive. 

I snapped back at the doctor mid-sentence and said: “what’s with that Holland place?  If you are worried that I don’t love my son, you are ridiculous.  I already love this boy.  Do I not love my other children when they don’t act “normal”?”  I just thought this man’s attempt to break the news easy to me was absurd, crude, and just distasteful. 

Normally, I don’t care what people think about me or my opinions.  However, for years I feared to let any other parent of a child with special needs know that I hate the Holland story.  It seemed whatever website, book, or Facebook page I went to; had this stupid Welcome to Holland analogy.

Let me try to describe what it is like to have a child with Angelman Syndrome.

I never let my shoulders down and relax.  I am always on the lookout for what is coming next.  I am in constant fight and crisis mode.   

Here is a Facebook conversation Debbie and I had just a few moments ago after I saw her post the above link:

Me:  oh my GOD...thank you for this. I honestly have been afraid to say I actually hate this Holland shit...I was offended when Scotty’s doctor told me this story at his 1 year well visit and then told me he had CP ....I can go on about how much I dislike this 'explanation'...I just might write in my blog about it lol..Now that I know others feel the same way...thank you again...

Debbie:  I agree Rita. It feels like surviving a plane crash.

Me:  yeah...a plane crash that seems to just keep happening...you feel safe one moment. Then BAM something else explodes....

Debbie:  Yes there is really no moment when you can safely exhale and say "It's all over and my child will be fine." Or "So happy my kid was born without that chromosome after all"

Me: so true...I don't think I have exhaled since he was born...constant state of “what's next?"

Debbie:  However, I know what true love is!

Me:  YES. Nobody loves me like Scotty loves me...I finally know what true unconditional love is

Debbie: It is so pure

And this Ladies and Gents explains what it is like to be Scotty’s Mom.

SOBERING THOUGHTS

How am I supposed to face each and every day knowing that I am alone with the complete care of my angel, Scotty?  Everyone is moving on with their lives...following their dreams away from us I have nobody who understands what the daily grind is for Scotty and me. (except other Angel parents)  We have each other and that is it.    

Those who I thought to love us are too busy hiding  behind their haughty masks of judgement.   I decided if we are to be ‘loved’ by anyone who forces us to be something we are not, they are not deserving of us in their lives.  Refusal for my children and I to do fall prey to the 'acceptance game' has saved my sanity.    My motto is to stand firm in who I am, never back down, and never lose faith.  I have raised my sons to live this as well  I have learned the hard way to not believe their smiles through their words. For the moment we are absent they are speaking of our inadequacies and failures.  

I am alone every night as my angel sleeps. Holding him as he seizes and tears fall down my face as thoughts of realization that someday he will be bigger than me and how in the hell am I to care for him on my own then?

I have no support physical, emotional, or spiritual.  Sobering as I face reality that no one in my life is capable of loving us as we so desire and deserve.

God for some strange reason believed that I was capable of caring for this angel on earth.

Some days I am so grateful for this honor and others I curse His choice in me.

There has been a line drawn in the sand and the only people standing on this side of the line is Scotty and me.

Somehow we will find the strength to do this alone.

The Darker Side of being Scotty's Mom

If you read my blog regularly it is no surprise that I have a son with developmental disabilities.  I often speak of the blessings and joys it is to be Scotty's mom.  It is true I often wonder what I did to deserve this boy's unconditional love.

There is a dark side of being a mom to a child with developmental disabilities that nobody wants to acknowledge.  I am here to tell you that it is not all “alleluia “moments and angels singing in the background.

I have found to be the best mom I can be for Scotty, it is vital to be a Bitch.

WHAT?! “Oh No she didn’t?!”  OH YES, I did!

 The past 11 years I have had to tap into my inner bitchdom.  I say this with the greatest pride.  You will find no shame in this adjective I have freely attached to my identity. 

I used to believe that being nice, kind, patient, and understanding will get whatever we needed for Scotty.  I have witnessed nurses butcher my son's veins and create unnecessary pain due to their incompetence in finding a good vein.  I have had been told that Scotty will most likely never walk, eat, or do anything that his brothers can do.  I have been ignorantly asked by our pediatrician who wrongly diagnosed him with cerebral palsy at 1 yo "What difference does it make that he has been diagnosed with Angelman Syndrome (AS) at 7 1/2 years old?  Does it change anything?"  YES, you ass, it changes a lot of things.  We now have answers to so many questions; like the obsession with water.  We have counsel, support, and encouragement from the real experts: other Angel Parents.

I have had the horror of watching my son have more than 300 seizures in one day because his neurologist prescribed the wrong medication for his kind of epilepsy and only have the dose increased as I called more frantic that seizures are increasing and are longer in duration.  If we had the correct diagnosis of AS, or if the doctor had a brain, he would have known that tegritol is NOT the med to put my son on.  

I had fought for 2 1/2 years for a safer bed for my young son to have to keep him safe when he has seizures and so he doesn't wander the house as we attempt to sleep.  To have his father tell me the day the bed arrived "I don't like it".  REALLY?  Do you have any clue how hard I worked to get this bed for our son?  

Countless doctor's appointments, numerous incorrect treatment plans, and a plethora of professionals talking to me as if I were overreacting or under-reacting, high strung or too laid back, and I was too informed or not educated enough on my son's conditions or delays.

Teachers, therapists, case managers, service coordinators, nurses, not fully doing what needs to be done to ensure that my son has the best quality of life he can have.  I don't know and I don't care if is due to  ignorance or pure laziness, professionals that work with children like my son need to have the endurance to look deeper and work harder on how to assist my son to be healthier, safer, happier, smarter, and stronger.  When I know there is a way, an answer, a possibility for my son’s life to be better, DO NOT ever tell me NO, I can’t, you can’t, he can’t, not possible.  My answer is there is a way, find it, ask the right people the right questions, fill out the paper work, just do it!    

“NO” and “NOT POSSIBLE” are no longer in my vocabulary.

I do not give second chances anymore.  You can’t or won’t do your job, I will tell you how to do it and get it done.  I have read, studied, researched, and found answers.  As a mom if am resourceful enough to find the “how to”, you as a professional better damn well be able to do it too.

As Scotty’s mom I have had the pleasure to encounter levels of ignorance that I was unaware existed.  My sisters, parents, friends, strangers, and colleagues have shown the abundance of their ugliness through their behaviors and attitudes. 

For 11 years I have slept through the night 0 times.  On a daily basis I can be pissed, pooped, and/or puked on.  Some days I get to witness my beautiful son have seizures while he  tries to push a BM out.  I get to have my son sit on my lap as I go to the bathroom, because nobody is home to watch him and I have no safe place to put him while I have to go.  Privacy is no longer a luxury.

I have people telling me what I am doing wrong.  How to potty train him better, how to get him to eat, cut his hair, let his hair grow, don’t do this, do that, don’t say that, say this…last time I checked I am the one there for my son day and night.  So, spare me your ridicule and “helpful” hints.

                                                    

Being a bitch has served Scotty and me well.  I don’t feel “guilty” when I leave a doctor and find another one.  There is no room for guilt in my life.  You don’t like it, too bad.  I will do what is best for my son.  I no longer care if Scotty’s teachers

or therapists like me.  I am not in the business to be liked.  I am in this life to do what is best for my son on every level in every area of his existence.

Oh you don’t like that I called you out on your ignorance and selfishness.  Don’t care!  I have fewer people in my life because of the no tolerance of bullshit mentality.  To be completely honest, I love it this way.

You get one chance to prove your worthiness of my Scotty.  His time is precious here on earth and no longer will it be wasted. 

What Must a Girl Do

What must a girl do

To feel loved

To know trust

To believe she is worthy of so much more

Shutting out all the voices

And holding onto the silence

To find her own voice

YAY ME

In light of all that has been going in my life for the past several months toward my children and myself:  the rejection, disappointments, doubts, disapprovals, gossiping, judgments, criticisms, back stabbing, abandonment, lack of support and encouragement by those who are supposed to love me/us, lack of acceptance for my  Scotty and our new normal that Angelman Syndrome has brought into our lives, and downright ignorance and selfishness…I have come up with a new way to stay focused, grounded, and remember who we are..who I am…I remind myself every day that Ryan, Christopher, and Scotty are amazing and I am so proud of each one of my sons for so many reasons ..I remind myself that I am one audacious Babe..I mean an incredible woman ;)   I am a mother to 3 incredible young men, I started and run an agency that helps families with children with developmental delays, I am in school fulltime earning my Doctorate in Education, I am a published poet,

I am the sole caregiver for my Angel, I am compassionate, my heart is bigger then Texas, I will lend an ear/shoulder/heart anytime a friend needs one, If I have it: it’s yours, and I am one incredible cook and baker…oh and did I mention that 3 incredible young men love and adore me for my strength, bravery, fortitude, and my defiance against bigotry, racism, sexism, unjust behavior of any kind..that I fight for what is right, true and beautiful…I am not afraid to pray out loud…I may fall often..but I get up just as many times as I fall..I am not afraid to speak up to anyone who disrespects my children or others’ children…I am an Angel’s voice ..and will do my best to be the voice for any oppressed, abused, or mistreated person…so YEP…I like me…I love me…and I love my sons that I have devoted and dedicated every ounce of my being to raise them to be incredible men!  So my new motto is:  this is the clean version:   SCREW YOU and YAY ME!!! To anyone who fails to see the awesomeness that lies within this skin of Rita Molino-Sell