Sunday, May 19, 2013

1 in 88

1-88
I cant believe out of all in the children in the world,  I was lucky enough for Phoenix to be chosen to be 1-88.
1-88 for Autism.
Chosen for Autism. I know we fly through life being different, and being viewed as not one of the normal.
I make my wish upon a star.  I wish, he could be normal for a moment, and wonder what would normal be like for Phoenix.
but, that would not be my son Phoenix.
I waited for you for so Long,
I cant believe I am one who was chosen to be Phoenix's mother.
I cant resist your smile, I stare into your eyes,  and a love so deeply only the Gods would understand.
I love when Phoenix hugs me close and I give him that squeeze around his back to make him feel better.
night time comes and I tuck you in, with all your blankets piled high.
1-88
think of 88 children called to line up row after row child after child.
 and One child is chosen. chosen for Autism.
1-88

Tuesday, March 19, 2013

Autism Strength

I find it ironic, just how many tales of Autism , Autism and super strength, that  I  have heard.  I never really thought about autism, strength and Phoenix.  but, I am here to share his story.
just after Phoenix's first birthday, he suffered his first double ear infection. Phoenix was prescribed is first antibiotic medication.  soon after his first dose of the liquid medication, he broke into a severe allergic rash, all over his tiny body.  I new something was wrong and rushed him to the doctor and he was prescribed another medication. On, his first dose he began fighting me but he took the medicine, he was only 15 months old.
Six months later, at  two years of age Phoenix developed another double ear infection and a very high fever. I tried to give him a dose of fever reducer medication, and he spit it all over the floor. In a panic I called the doctor and rushed him to the doctor's office.  Phoenix was prescribed a liquid antibiotic medication. I didn't think much of it.  I went to the pharmacy and got his medicine, I couldn't wait until Phoenix would feel better I thought to myself. His prescription medicine was filled, you know the bubble gum pink stuff. 
I rushed home to give Phoenix his first dose of medicine.  Thinking to myself, he is going like this pink bubblegum medicine.  but, to my amazement,  Phoenix spit the medicine back at me. he refused the medication.  I decided maybe to mix it with milk and Phoenix refused it, then we mixed it with soda. He would take one sip and hand it back to me.and still, Phoenix refused his medicine.  I was in a panic and called his daddy to come home and help me. Maybe his daddy could convince Phoenix to take the medicine.  but, to my sorrow, Phoenix refused his daddy.and Pink bubble gum medicine was everywhere, where Phoenix had spit it all over the place.  All I wanted was my son to get well.  filled with worry at this point as Phoenix's fever spiked even higher.  I ran a cold bath for him, while his daddy called the doctor. I managed to get his fever down, I grabbed him, dressed him, and we rushed him back to the doctor's office.  Phoenix's doctor recommended a shot of antibiotics.  We had no other option.  My son was in horrible pain in his ears by this point and his fever was creeping back but higher.
well, this was first clue of something different, as the nurse came in with the shot, with my son being very sick at this point. He began to fight his daddy.  Phoenix was terrified of the shot and his daddy could not hold Phoenix down for the shot. another nurse came in to help hold Phoenix along with the doctor,his daddy, and me at Phoenix's feet. All to get the antibiotic shot administered to my son. Phoenix weighed only twenty pounds at this age.  can you imagine how me and his daddy felt?  we were relieved he had an antibiotic in him, but we were confused at what had taken place between Phoenix and his refusal of all medicine, and him fighting and resisting the shot, and the strength it took to fight the doctor, his daddy, the nurse and myself.

when the time came for Phoenix's autism diagnosis, as per protocol Phoenix's autism doctor wanted to study and test  Phoenix's DNA to check for genetic mutations.
oh my goodness, it was time for a blood draw for the DNA test.  you would have thought Phoenix was fighting for his life, kicking and screaming, me and his daddy thought back to his antibiotic shot, and told the doctor we will need more help to get Phoenix's blood drawn.  it took two male nurses, the doctor, and his daddy to get this blood drawn. all I could do is stand out of the way with no expression.  I just wanted to hide from what i just saw.  Who was that child?  Phoenix became something I had never seen in him before. His eyes looked like black saucers filled with rage and strength.
from this point  on in Phoenix's childhood, at two years old, vaccinations,  were almost impossible.  it was the same drill, his nurses knew the deal with Phoenix, it  was going to be a fight, and he always needed at least three nurses.

I remember back to when Phoenix attended Early childhood his teacher and teacher's aid would tell me over and over, how strong he was. during his meltdowns was when he was at his strongest.  I found myself apologizing a lot for Phoenix's melt downs.

Even when Phoenix was simply playing with me, if we are playing tag, whew he gets so happy and excited, when he tags me I can feel a sting through my entire body. CHI

Now, that Phoenix is in a Private Autism School, I've heard more about the Strength of Autistic children. especially during a melt down situation for the child. it seems these children have the ability to tap into their adrenaline at any moment. When these children tap into their adrenaline, its an amazing sight.  I would like to compare this to the Incredible Hulk.  get ready for the Hulk.  they're just happy sweet children, then when something just isn't right, or they can not get their get their point across, or just don't get their way. expect to see an incredible transformation. from angel into a melt down. you wonder where your child goes? your child's strength has tripled like the Hulk. My Phoenix will fall to the floor during a meltdown and with all my strength I can not pick him up off the floor. he fights me with an incredible intense strength. there is no reasoning with him.  I can only hope to talk him through it and overwhelm him with my love, and I wait for my son to return. when he finally gets through the melt down.



 One day, I went to visit the autism school.  One of Phoenix's class mates was upset. It was incredible because he was fighting his teacher with intense strength, all over a stuffed animal he wanted to carry home.  I do not understand what these crystal's see in their stuffed animals, but they just love them. and you dare not take them away. or expect to fight.  I guess the stuffed animals make them feel better.  I do not know, but Phoenix's full sized bed is loaded with at least twenty stuffed animals and he loves every one of them. 
I am always so nervous when I visit the Autism school.  I never know what to expect.  All these children are exceptional! I believe Crystal children are our genuine Mutations .  All with their special abilities and non abilities. 



Saturday, January 5, 2013

dreams of Autism

How many times must I Repeat this.
Some many people ask me I How felt, when  I received Phoenix's Autism diagnosis. most can not believe,  I did not feel sad, devastated, where there tears?  no tears.
I have always been just grateful to God,  that Phoenix was here.    He was a miracle, a real in person miracle.
I remember nights when I was pregnant, and I could not fall asleep, and I was alone by myself.  I could hear the whispers. the whispers, Your son will have Autism.  as I drifted to sleep, I said in my dreams, I can handle Autism, just make him appear. make him beautiful.  please, in my dreams I pleaded to the gods to make him appear like everyone else.

Autism is like stepping over Mountains, its an enormous leap. but, Phoenix is here
He was so little when we received his diagnosis of Autism. Phoenix was just two years old.

Monday, July 16, 2012

New Autism School

Phoenix has been going to his new Autism school.  I have even let him enjoy the school bus. My crystal baby is becoming a Crystal Child.
I cant believe Life is happening this way.  I always wanted Phoenix to live a normal life,  but he is not a normal child.  I have tried and tried.  Parents of typical children never know what this is like.
i think often that maybe Phoenix is the new Normal.
more and more of the children are being Born with Autism.   Does God have a Plan for Our Sons? 
Emotional but unemotional children.

the autism school sends home a journal everyday with a little a note.  most reading, Phoenix ate his sandwich and raisins.  He is so smart,  bla bla bla
it has been to school for fifteen days, and his journal always reads. He is smart.  but, what in the world is he doing to be called smart on most every journal entry.
sometimes i feel like the Autism School is just being nice in those journal entries.
isnt that the way it goes.

lately Phoenix has been driving me nuts.  He has learned how to use the remote control.  and he loves DVR.  he rewinds his favorite shows over and over.  he does learn to say new words this way. that repetition thing.

Tuesday, July 3, 2012

Power Outage and Autism

what a couple of strange days we have had.  we had a powerful storm roll through the mountains leaving millions without power.  electricity....
poor Phoenix.  autistics are so routine driven,  most autistics want their day planned the same everyday,  it builds comfort for them  i guess.  but, my gosh,  Phoenix did not understand why he could not watch his precious TV.   He kept grabbing the remote and pushing the buttons and nothing would happen for him.  shew,  Phoenix had the ultimate melt down.  it was already really quite because we didn't have any power and it was dark.  Phoenix was fine with the darkness, but the no TV.  his voice was vibrating the walls.  there was not anything i could do to calm him.   his meltdown felt like an eternity...  screaming, fist pounding madness.  a temper tantrum five fold.
Phoenix finally calmed down,  he gave me a hug and started playing with a flash light.
and he was happy again.  then daddy went and got a generator, and Phoenix could watch a dvd movie.  he was so happy, laughing and giggling watching TV. Phoenix's daddy became a savior in the eyes of Phoenix.  finally something normal, while going with out power and cold showers.
it took a number of days before the power was restored and some people are still sadly without power.with millions without power i know some of the people have a child with Autism.  my goodness what a total upheaval  in routine. i prayed for a lot of patience...
 and one gallon of bubble juice help Phoenix make it through the boredom.  bubbles are wonderful, ya know?
 Phoenix is almost balanced back out and back in to routine.  he still doest understand not going to school.  the autism school closed because of the power outage.  he was ready for school this morning. 
he sadly took off his shoes and sat on the couch with me and watched the morning news.
I made him his favorite breakfast. plain  toast and one box of raisins.

Wednesday, June 20, 2012

Disconnected

can you tell me if this life is fair?
I wish I knew.
as everyday passes I feel more and more disconnected from  my family. maybe they think of me sometimes.
I dont know why. autism maybe.
People always fear what they do not understand. but a family I do not have.  its pretty sad.
It came clear to me when asked at one of Phoenix's meetings with the school board,  Do you have any kind of support system,  or family to help you out with Phoenix? I smiled and looked at my husband, and we shook our heads no.  No one, just us.
I do not mean to be to so disconnected. 
I feel that love went away when I moved away.  Out of site out of mind.
All I have to talk to is you, and the rest of world.
I wish my family just had a minute with Phoenix in his own enviroment.  He is brillant beautiful child. and I wish they wanted to get to know him.  time just keeps speeding up, every minute going faster and faster. before we know it time is up. Phoenix is already five.  I often think, maybe they just do not want to know him. it hurts. I try to understand how people become so self absorbed with themselves. I will never understand.
nothing is ever easy.
has Autism disconnected me too?

I will move on now. 








Thursday, June 14, 2012

brown liquid

I have not ever been truly scared in my entire life.  but, autism scares me.  i know i am not suppose to feel this way, but i do.  some days a strong regression shows in Phoenix.  he becomes a different child when he drinks any type of cola beverage.  Phoenix calls it brown liquid.  after he drinks a sip he slips away.  it almost a allergic reaction.  he drops to the floor and starts spinning in circles like a demon possessed child.  and he starts grinding his teeth...     its strange.  this beverage that most people have tasted once in their life,  the bubbles,  the yummy of it all.  everyone enjoys a soda every once in a while.  some people have this soda every single day. Phoenix, who i wish could be normal just a little bit, can not have even  a taste.  can you imagine no brown cola in your life? its pretty simple for most of us.  Autism is not. Phoenix is not. being  Crystal is not.
after just a sip it took Phoenix three days to recover.  no more soda in the house for sure.