How we got here

In light if the tragedy last week it got me thinking...

Autism, and all the other mental illness disorders so to speak... they are plagued with stigma from the time of diagnoses. Either by the parents themselves because often we like to stay in denial that they don't have it or its not that bad.  Out of finical strain many very bright capable children are put into special ed classrooms to be babysat and out of the parents exhausted hands for 7 hrs. Its all some parents have. Its their savior their sanity. The downfall is what happens to this child.

Here is my story.  And it really does take a village.
Dane was diagnosed at 5. VERY late due to his seizure disorder and meds he was on.  He was put in a special education classroom the following week. this was very hard for me but the "professionals" swore this is where he belonged.  Only a few weeks later did i see him isolating himself and walking the perimeter of the school yard. I was shocked! Dane has always LOVED people! loved friends and interacting. to see him off by himself put me in a rage.
We left the SPED classroom that day and never looked back. I fought for full inclusion in our neighborhood school and got it.  Dane spent the next 5 yrs fully included and happy for the most part. He had friends and play dates and although it was a BATTLE between me and the teachers and administration Dane was growing.  This all came to a screeching halt at the end of 5th grade. he was isolating again because his teacher decided he was too much effort to teach. she sat him in a corner and at every turn pointed out he was not like everyone else. SO it began again, at every chance he could get to get away from his peers and everyone he took it.  Once again i took Dane and walked away and never looked back.  He recovered! thank GOD!
You see, No matter the diagnosis there is a PERSON in there! A soul longing to be understood,loved accepted. to be treated like everyone!  Yes some of them are weird but seriously people have you looked around lately WHO THE HELL ISNT weird!  We are living in a society where women are doing some weird ass shit to their faces and we are still having lunch with them and talking to them like we didn't notice they spent 10 grand fucking up their face!!! that was a conscious decision they made, but we don't even flinch.
People with a Diagnosis are not making conscious decisions to be weird! They just are! At the cost of what happened this week ask yourself ...
Am i the kindest person I can be? Am I reaching out to that kid in school or having my children reach out to that kid in school that is "weird"? Loving, Accepting thinking about it!!!!!!

ups and downs

I don't know why I am so emotional these days. I feel like i am crying or waiting to cry! Its so stupid! I look at Dane and I am filled with this love hate waterfall!  I remember it all so clearly. His first step his first seizure all in the same week! the hospital stays the testing, the ICUs all over the world,psychological testing,spinal taps,OT,PT SLP,EEG tests tests and more tests. All at the ripe age of 24!!!  I am proud of myself and filled with anger all at the same time! Joy for having a son that has given me purpose but pissed off because it's not the purpose I wanted!!!!! Life is funny that way isn't it? Surprises around every corner!  Who would have thought I'd be married to the most amazing man and live this life of privilege entwined with all this hardship! I suppose God wanted to keep me from getting bored.

I certainly don't have time for that!

You see Dane goes to bed running his mouth and wakes still running it! there is never a silent moment with the kid. I keep asking God why didn't i get the kid that plays video games and watches tv for hours on end. NO i have to get the kid that is into mass finance. I am in the midst of writing a letter to Virgin America or Barclay bank asking them how he was able to apply for a credit card for him and his 84 yr old grandmother and pay off my $1700. American Express bill with their newly opened acct. I thank God grandma has a strong heart because she got the credit card and the $1700. bill all in the same envelope! And there was Dane with a grin from ear to ear proud of his accomplishment.

He astounds me everyday with what he is capable of. But I am overwhelmed with fear of his future right now.

What I'm up against

Holy Cow!
I wonder most days how I survive. To be honest I think I function on a level that stays just in tune enough!  Being Hyper focused on Dane does me NO good! so... I let him sort many things out himself.
This has proved to be a very good educational language therapy for him!
Because his obsession right now is shopping and during the holiday season it is candles and Martinellis Sparkling cider. I am sure he is on a first name basis with his favorite companies.  So he calls the stores he wishes to carry the flavors he wants. Everyday!!!!!!  Right now he is on Bristol Farms ordering manager Dino about carrying Apple Raspberry.  Dino said he would get it for him and it would be in in a week. Dane passionately waits his week and then calls to check if its in. It's not! he calls everyday asking for Dino.. I tune in to the tone of the people answering the phone..."O it's that man again!"
i giggle...
So yesterday, I hear Dino tell him Martinellis doesn't carry it anymore and they won't be getting it. Dane questions him appropriately and then hangs up and immediately calls Martinellis!!!! He speaks with his now "friend" there and and confirms they are in fact making Apple Raspberry sparkling cider and proceeds to tell them that Dino at Bristol Farms in Manhattan Beach told him Martinellis isn't making it!  So Dane hangs up Calls Dino back and tell s him he spoke to Martinellis and they DO MAKE IT!  Dino says Yes I know I just got an email from Martinellis Informing me!  I will definitely get it for you Mr. Capo!

I lmao!!!!! does Dino know he was just reprimanded by a 17 yr old who's paper work says he's MMR!(mild to moderate retardation)  Seriously I have just started a round of Psychological educational testing and the Psychologist I chose based on a referral decided to stop the testing because he has a 3 second attention span. She then refers us to our neurologist to be put on attention meds!!!!! i say are you F****** kidding me?!!!!
his attention seems perfectly fine to me and his intelligence may not be measured on an IQ test but he is definitely not MMR!  The boy is in Gods hands for sure because he exhausts every cell in my body and I know it is not my strength that endures but my GOD's.  Jeremiah 29:11 is and will always be my prayer for Dane!

I'm not talking to you about doughnuts!

O Dear Lord this week has been a doozy!!!!!

We have hit a whole new level of functioning! I have had to ground him from his computer again due to him ordering crap again. We had made a plan to go to Torrance Bakery but he screwed that up!! so for hours all I heard was I want donuts.... on and on and on.. so I finally yelled I AM NOT TALKING TO YOU ABOUT DOUGHNUTS!!!!!! LEAVE ME ALONE!!!



He is so independent and brilliant that we just fall between all the cracks!  I signed back on with Harbor Regional to find services and opportunity for my boy. My beloved case worker looks at me and says...
I don't know why you signed up with us again. He is too high functioning for anything we have to offer and too low functioning for typical programs. So I'm really sorry Ms Capo you're kinda stuck!
Yea me!!!!!
I am constantly reminded how far we have come but this phase is very difficult. I suppose it is the teenage yrs with all kids that are difficult, having an autism diagnoses just adds another layer.

I am not really certain why people blog. Is it for me to work out my own anxt? Is it for your enjoyment? I am not sure...