Dr Jekyll and Mr Hyde

my husband has been away alot recently. leaving me and Phoenix home alone and bored. my husband decided to take the afternoon off yesterday, to spend with Phoenix. he is going away again for a couple of days. so, we both went to go get Phoenix out of class early. and when i walked in to get Our son, uh my heart dropped when i walked in the classroom. the entire class was working on a smart board activity. and Phoenix was sitting in the rocking chair all by himself. his assistant was jib jabbing with a substitute. i thought i was going ripp some one's head off. but, i didnt. i did say, i Dont Ever Want to Come BAck In here, and Phoenix is sitting by himself. RAGE. and then sadness comes over me. Once Again, among Phoenix's peers he sticks out, singled out or is isolated.
what i can not understand.. is the difference between the child i wake up in the morning and the child that I leave in the classroom. its like having two different children. Phoenix talks at home, he talks in three word phrases. but, at school he is quiet about himself. or if he is mad about something at school he becomes defiant... he will slam the bathroom door and he will turn the lights on and off. Even with A stern NO his teacher can not make him stop. the teachers probably go through alot with Phoenix,and their patience wears thin with him.. its that darkness about Phoenix. at least he is ONE with both the dark Energy and the Light Energy. but he is Not One with your every day Life energy. that takes SO much work. its incredible.. maybe we will attain balance for him.
school can be overwhelming for him, I imagine, all those kids, everyday. even going to kindergarten was stressful for me .......... school could be stressful for Phoenix.
he knows and does so many things at home.
dr jekyll at home Mr Hyde at school. i hope the potion wears off soon.

Kryptonite Cupcakes...

It seems Phoenix's early childhood class has been in Birthday mode. And with birthday's come the cupcakes. Cupcakes and more Cupcakes. I have mentioned to Phoenix's teacher about his extreme sugar sensitivity. that does not make the Cupcakes go away, birthday's come and birthday's go.... I wonder....... if his sugar sensitivity was an allergy and treated like a Peanut allergy, there would be No More of those awful Kryptonite cupcakes. NONE! i understand the difference between allergy and sensitivity. you could ultimately die from a Peanut allergy.
i can tell you this
i can sit back on the couch and watch Phoenix become a different child after he eats a cupcake.
different kinds of cupcakes effects phoenix differently. just like the different colors of Kryptonite, Green, Red, Blue, Gold, black........effect Superman. thus i bring you the Kryptonite Cupcake.
the most gentle of Cupcakes would be white cake and vanilla frosting, after a couple of glasses of water and a few hours Phoenix's patience and words come around.
and the worst of the Kryptonite Cupcakes is by FAR, the Chocolate Cupcake with Chocolate frosting... Just one of those Cupcakes takes Phoenix somewhere far, far, away.......... its sad, because Phoenix doesnt understand any of this..... he just says on the way to school " cupcakes,, OH BOY.. birthday birthday!"
if you were a mother, and you witness your child just suddenly disappear and just become a whole different child.. and cupcakes are to Blame. what would you do? tell his teacher, no, NO cupcakes for Phoenix, and the rest of the children get cupcakes....... that would make him seem even more different. maybe as his tiny body grows, he will be able to tolerate more sugar... until then..........

the EDCD waiver.

i just took a deep breathe as i begin to write this.
the EDCD waiver is One of the Most Unbelievable things i have ever Heard of.
The EDCD waiver stands for Elderly and Disabled Consumer Directed waiver. This waiver serves elderly and persons of all ages with disabilities. An individual must meet nursing facility eligibility requirements including both medical and functional needs.
you can read here for a more in depth look at the EDCD waiver.
http://cuddlebugkids.blogspot.com/2010/01/va-medicaid-edcd-waiver-introduction-in.html

i was first introduced to the EDCD waiver from Phoenix's former Occupational therapist. She happen to call me and asked about Phoenix attending summer camp. and in the conversation, somehow it turned to this waiver.
The EDCD waiver would allow Phoenix 20 hours a week of in home care. WHAT?
and then i was told that The EDCD waiver wasnt based on Our Family Income. The edcd waiver was Based On Phoenix's Income! WHAT! He is four. But then i was told of the many autistic children who receive SSI. a social security disability benefit check a month. Then i thought back for a moment to the Day Phoenix was diagnosed with Autism. At the end of the appointment Phoenix's Doctor asked us if we wanted her to start the paper work for SSI. me and my husband looked at each other and laughed. No thank you. anyway, back to the EDCD waiver..
my next question about the EDCD waiver was Funding. Where does the money come from? the answer. Federal Funds. again i thought to myself, what? REALLY. our National Debt is spinning out of control, and if approved for the EDCD waiver Phoenix would have a 20 hour per week NANNY! and FULL medicaid benefits PAID by YOU THE AMERICAN TAXPAYER.
I do not think the EDCD waiver is for Phoenix..I stay at home full time to take care off him. I know there are many Parents working full time and could benefit from the 20 hour in home care
for their Autistic child
Parents of Autistic children who really need the HELP, please by all means call your local Health department TODAY and ask about the EDCD waiver. it could take months to get the Ball rolling. The EDCD waiver looks to be a HUGE Loop Hole for Autism care. and i know PARENTS need all the help they can get with a low functioning Autistic... bless your hearts everyone...........

Phoenix is potty trained, he can dress himself, though sometimes his clothes are backwards. he can go in the snack drawer and help himself to the raisins.
Phoenix just being able to do those things would make him ineligible for the waiver.

I will tell you, when i was on the phone with the Health department, researching the EDCD waiver, the lady at the Health department blew me away. She asked " what kind of Autism does your Son have?" .................. UH???????? uh? uh?
i drew a blank. i said "I dont know?"
the High Function Autistic diagnoses Left my mind.. and i honestly dont think about what type of autism Phoenix has........ i do know he is CRYSTAL.............

well, i finally remembered to Ask Phoenix's Early childhood teacher about Occupational Therapy at school. Phoenix has a lot of sensory issues, but he did not qualify for Occupational Therapy because of his ability to draw and write. I just looked at his Teacher with wonder.. WTH.. REALLY? this must be a part of the High functioning autism Spectrum rainbow... i asked Phoenix's teacher. " is that Good he didnt qualify?" she said YES...

all their eyes

Phoenix and I went to Walmart to gather some groceries after Speech Therapy today. We were buzzing through Walmart just like usual. Phoenix was in the square part of the cart, just minding his business looking at all the people and of course the Giant Wall of Candy beside him. then, we approached an elderly silver hair man. he looked at me and then to Phoenix sitting in the cart. He looked me in the Eyes and said to me " GOD BLESS YOU, god bless you and your SON! i just rolled my son away as quick as i could. I thought to myself LOUDLY " That Just Happened. JESUS CHRIST!"
Well, bring it on.gimmie More... HA... give ME all your Blessings... I will take them thank you.
But i will will tell you this...
it can be humbling, it can be amazing, and just down right unnerving. and People wonder about me, ALL the time...I keep everything so secret, when you meet me face to face. i will look you in the eyes but that is ALL. I have lived in this town for three years and i know NO one but They All Know me.. could you imagine that?.. it will be Summer soon, and i will begin covering my face again with Giant hats and BLAck sunglasses, the mountain Sun stings my face, the more I Cover Up, the more i will stick out... and that it Turn will make phoenix stick out.. OH, and when i go to Phoenix's school to Pick him up, its feels like the entire town is there Picking up their kids... I just want to RUN the other way, but instead i get to Walk Past All the Parents waiting in the Hallway for the BELL to ring. Phoenix's Early Childhood Class is in the middle of the school, so, i get to walk past all these People to get to my Phoenix. and when I get him, I have to walk Past the People again. this alone drives me mad... I feel ALL their EYES.........
if you are wondering how or why these people know me,or even my name..... I wonder the same thing.....but, i could blame this on my husband.. I could...
okay, so back to Autism and the Crystal baby, i think a little http://eternalsunshineofthesplitmind.blogspot.com/ came out on the page.. whoopsie..
Phoenix is doing okay other than kicking and biting... in class.. his report card actually read that.. I couldnt believe it. but okay.. his early childhood class is going okay except story time in the library. phoenix hates it, he cant sit still through storytime. Phoenix's teacher explained to me that most four year olds have a hard time sitting still.. hmmm i agree.
next year Phoenix will begin math, because he loves numbers and shapes so much.. i believe he will benefit from learning something he enjoys..