Wednesday, November 19, 2014

my recurring dream came true.. for Phoenix

my baby angel was a wish  a dream that came true.  I prayed everyday for you my son..  my infertility was tormenting me everyday,  cursed..  i felt...
 I would dream of you, recurring dreams of a blonde haired brown eyed boy..  I thought  my dream would never come true..  all I wanted  was to sleep and dream, just to spend time with you..   but, then I was sleeping my life away..  I only felt alive in my dreams..  I still remember in my dreams of you, the swing you and I played on.  Push me mommy ...  the dreams were so real.  then I would awake and I would cry because I could not be with my son..  I loved you..
I fell pregnant after eight long years of dreaming of you.I was pregnant and the dreams stopped.  tragedy happened to me, .  I remember being at the doctors office and the ultrasound showed no heart beat.. my heart shattered and was destroyed..a Miscarriage..  the reoccurring dreams began again..  My son had returned to me in my dreams,  and everytime I woke up I wanted to die..  waking up every morning was the hardest emotionally.. 
I fell pregnant and once again I felt alive again. I felt I could live again.I was pregnant again and the dreams stopped.  I was so scared.  I was still scarred from the last miscarriage...   I needed my dream to come true..  every week of pregnancy I felt I was blessed....  I thanked God everyday  for my gift of  pregnancy,
 I was in my 16 week of pregnancy , it was a saturday afternoon ..  I went outside and all of sudden I felt a powerful force of gravity and dizziness, pulling me straight to the ground. I passed out and crashed to the ground...  I awoke minutes later and I crawled to my porch steps barely holding my head up. and crawled inside..  I could not understand what had just happened...   my next doctors appointment was monday.. and then again I was shattered with another ultra sound..  my baby was gone, no heartbeat..  GOD took my son from me that Saturday afternoon.  God stole my beautiful boy,God stole my heart,God stole my soul...  why..  I never felt a greater grief,pain..  I was broken..  I just wanted to hold you, I wanted to play with you on the swing in my dreams..
the dreams began again..recurring,  my blonde haired brown eye boy..  I found myself in the deepest of depths of depression..  I was sleeping a lot of my time away,  just to dream of you and spend time with you in the alternate dream world.....  but then,  I would have to wake up.. 
I believe I was being punished by god...  god was being so cruel to me...  taking both of my children from me..  I could not stop crying,  I was un consolable..  a million different hugs couldnt help me..
my broken heart would never heal..  I still cry for my children,,  I miss them so deeply..  I know they would have blonde hair and brown eyes..
the days lasted forever, but I did fall pregnant again..   I was terrified..  but Everyday of pregnancy was joyful.  every week felt like an eternity..  the doctor told me not to get excited until after the 16 week of pregnancy,  but even then,  I should be guarded..  I remember using a pendulum over my pregnant belly, to make sure there was still a life force in my belly,  the pendulum spun in strong fast circles this went on for hours everyday..  I was so scared for me and my unborn son..  I received specialized prenatal care during this pregnancy with ultrasounds every week.. every week I would see your tiny hands,  your tiny feet..  and your strong heart beat..  I was so nervous with every prenatal visit,  thinking the worst but hoping for the best..    during the last pregnancy odd things would happen to me..  I would hear the whispers in my mind..  I dont know what or who it was,  but I knew my baby was going to have Autism.  I heard the whispers of Autism over and over..  I responded with,  just make him beautiful..  please just make him beautiful....after all my grief and loss of my babies,  I didnt care about the Autism..  I just wanted him to be here..  here with me, on this earth.. eternity passed and you were born..  when you were born you didnt cry.  you did not cry,  not even a whimper.  i could not hear you,,  I started screaming, is he ok?  and of course with your giant black eyes, I instructed the doctors to place you in your fathers arms first..  and with no crying and your giant black eyes looking eye to eye with your father..  I finely felt like I was in a spiritual heaven,..  you were born with brown eyes and black hair..  your hair quickly changed to blonde...






Sunday, April 13, 2014

another Autism Melt Down

Autism,  Phoenix is a blessing,
with Phoenix's growing age,  his melt downs have becoming fewer and fewer.  but, my gosh, when he has a melt down he has to let the world know about it,  or at least everyone in Walmart on a busy Saturday afternoon. 
from the moment he walked in the store he starting melting down.  I tried to soothe Phoenix through the melt down but he needed  to melt down and burn like the Phoenix he is.. Could you imagine having so much energy?  so much sensory overload within yourself , an energy you did not understand, but then amplified because of sensories.
some parents maybe think about keeping their child home, and protect and prevent your child from having a melt down in the first place.  but, I believe if we keep trying to De-sensitize him,   Maybe, one day, Phoenix's melt downs will be behind us.
He was doing so good in public places,  it had been a couple of months since his last atomic melt down..     So, we keep trying to De-sensitize Phoenix,,,  and his melt downs are becoming fewer 
I know How hard it is to the parents and the child faced at a Melt down at any moment during an outting..  my gosh, It is a rough life just living in fear of a Melt down. I have had those awful stares from people  during a melt down..  they cant help but to stare back at us. sometimes, people look at me with pity,  sometimes people stare because they are curious.  after all,   you rarely feel your eardrums vibrate your ear like that and from a  small child. sometimes people just stop and look at me and smile....  I try not to make a lot of eye contact during a melt down in public..  I keep my eyes focused on my  child..  I can hear their thoughts when I look at the people close by..it seems like All Eyes are on us, and they probably are..   I bet people wonder what is wrong with him.  I try everything to calm him,  but I do not give up..  In our world there is only you. 




Wednesday, March 19, 2014

the green grass between his toes..

Lately, as warmer weather approaches,  Phoenix takes his shoes off and tickles his toes in the green grass.  as the world turns and turns again,  I found our family in sunny Florida last month  at an outside memorial service.  the St Augustine grass in Florida is like beautiful soft green carpet.  I could not keep Phoenix's Shoes on.  All he wanted to do was to be in the grass.  I guess,  he needed to ground and recharge, but he did it his way.   I didnt have to do a thing.  there he is was with his shoes off laying in the grass.  he then stood up and looked at me and then he looked to the sky, and said to me "Mommy I love the grass and I love the Sky."
I said to Him "I know"

Thursday, February 6, 2014

is it to late

no one expected Autism.  what could I do?   is it to late to say I'm sorry???.      Your eyes  I get lost in,  are so big and bright..  please dont bother,,   you're already here..  I'm sorry. but I wanted you to be here so desperately.. I did whatever I could do..  how would I Have Known you were going to be born into Autism,  but I did..   your first words were so soft,but barely there..  ,
now, its me,, I'm Not here..   lost in a different world..  please try to find me..      as I found you......I still believe in miracles...  a tiny miracle is found in all your words  everyday..  

I feel like I am so lost, at times.. Autism sucks you in,,  like a black hole, caught in the universe..  there isnt to much escaping from it..  All day,  and sleepless nights. its a good thing I have insomnia myself, I guess that's why my crystal was born to me..  

a while ago, people should not even bother to find me..  but, this, Shelly StarZZ.. is still here.for you and the rest of world..
Autism, and a Crystal,,  I could cry..  when you walk into a room filled with people, most people with awareness, stop what there doing immediately,  just to take a look,  or get close to you..  the people do not understand,  they just think you are a beautiful boy,  and are drawn in with your giant black eyes..
what can I do, except but to let people share the world with you..

Thursday, December 26, 2013

Moving days and Tactile sensory

Our family has just completed our relocation  with my husband's work.  I was so depressed and full of anxiety leading up to the move.  I was so worried about Phoenix moving houses and changing schools.  Phoenix was going to an Autism school before the move. I thought he was doing okay. but, then all of a sudden his tactile sensory has been off the charts.  Phoenix has been driving me crazy with this tactile sensory overload.  My hair is in a bun on my head because Phoenix cant keep his hands off my hair.  I've tried other sensory toys to try to help him with this sensory.  but nothing seems to work right now.  except my hair and anybodies hair he can get his hands on.  it has been tough.  his teachers at his new school have to wear their hair up too.  geez,,
Phoenix has always had strong tactile sensory overload.  When he was a baby, he would pull his hair out and roll his hair between his fingers. Then Phoenix discovered fluffy from a couch I used to have.  He would tear a hole in the couch to get the fluffy out. then his hair finally grew out.
I just hope  his sensories calm down because it has been tough especially since Phoenix experienced a sensory overload to a Christmas family get together.

Tuesday, July 2, 2013

the Self Made Vegetarian

I dont know how many parents go through this with their Crystal children?  But my Autistic crystalline child refuses to eat meat.  every evening we go through the same ritual. I fix Phoenix's plate with a tiny bit of meat on his plate. and every single night I get a NOPE!  "will you please taste this Phoenix?" he takes a fork full puts the meat in his mouth and he spits the meat out in the trash can every single time.  at least he tastes the meat, which goes in the trash.  we have have been learning over time, about his intense dislike of meat.  I have read over and over that Crystal children are vegetarian.  but,I never understood how the crystal children became vegetarian. I always just assumed the child was vegetarian  because of their parents being vegetarians.  or something like that?
my crystal child love vegetables,  you can place a piece of corn on the cob, and lima beans on his plate and Phoenix is so excited to eat. he says over and over "delicious" "delicious"
can you imagine?  I have a self made vegetarian.
Is your crystal child a vegetarian by choice?
amazing isnt it?

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.