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.