Autism PRIDE DAY

For Autism Pride day, cheers to us parents as advocates!!! Xoxo

S had her autism meeting the other day.  How did it go? I was highly disappointed.  Here is the background a year ago S was diagnosed with PDD-NOS/Trauma disorder.  Children's hospital (one of the best if not the best hospital) said they think that it is Aspergers. So we worked super duper hard for a year on her Trauma Disorder and now we are a year from then.  S has improved in leaps and bounds in so many ways related to the trauma, she can now talk about her past when asked questions and doesn't retreat into her bubble.  She better understands a little as best as a six year old can to what happened to her mother ("She was sick").  The thing is that other things didn't change, her verbal and understanding have not changed.  She still cannot verbalize feelings, touch, she gets over sitimulated in many different environments, echos schedules, and questions asked.  She cannot intiaite a conversation and when you do talk to her it's black and white.  Nothing more is ever added.  She gets upset with certain foods, clothing, etc...  She cannot get over "mine" like a two year old, sharing is just not understood.  There are so many other qualites with her anger and her bubble when over stimulated (makes no eye contact, rocking, etc....)  I don't think I want or need to explain this right now.

We went to CARES the other day and I went with excitement that the cure to all was going to be handed to me.  That the Aspergers label would be given and we could move onto therapy part.  The part that I am waiting anxiously for.   This is not what happened.  They interviewed S for about 40 min.  with conversation about friends, school, family. They watched her play and read a book to her.  WHATEVER!!! Her conversation was not elaborate, it was the answer to the question asked and nothing more ever added.  Her description of "Why is BLANK your friend?" her answer "because..." Because why? "Because I asked her?" that was her answer!!!   Not all the other stuff added....

My daughter does not have severe Autism and I thank God for that.  I know that I am fortunate that she is verbal, that she can communicate, smile and eye contact is made.  Let me say this... we worked on eye contact since the beginning.  Eye contact will not be made with you when a story is being told, or she is worked up, only on short calm answers.  That is what the counselor asked, short calm answers!

She can point and verbalize because in my kitchen hangs a sign with stick figures that reads "USE WORDS" the person is saying "Please don't do that,  stop, help, etc...."  with that is a schedule of events for the week.  These are the things that we work on.  I do little charts with expected an unexpected behavior.  I have created my own therapies for her.  Her school psychologist has helped with a lot of this out of his own time.  I am thankful for that.  My question - Should I have left it alone, so that they could see how bad she was when first diagnosed?  Should I have not helped her because now she has made improvements and they can't see it as clear as the beginning? Autsim doesn't just go away, you can improve, there are HIGH FUNCTIONING CASES!!!!!

The Psychologist at this center rescheduled another visit in a week to test her IQ.  S is not dumb, she is very, very smart.  She can read like no one's business.  Her memory can do weird things like not remember what she heard a second ago, not understand common phrases but then memorize songs and music like nothing.  Here is what, was said "I don't see Autism in her, she can make eye contact and she is verbal."  (THOUGHT:  You did not just say that??!! Do you not know about High Functioning kids??!!!)  My answer "High functioning children can speak, and some can make eye contact for short periods.  I know she is not severe, I am not asking her to be.  I am asking for help, I don't care if regional doesn't pay for us, I just want to know how to explain things to my daughter, I want to help her,  shoot I'll give her my own therapies if I have too, just tell me what is so I know what to do."  Her answer  "I think it might be a behavioral disorder."  Me: "You think my daughter has bi-polar or something like that? I don't think that is what it is.  She doesn't just switch moods on a drop of a dime.  She is gets upset because she can't say stop, no, I don't like that, she can't say I want to go home.  I have to watch her eyes to see if she has had enough, listen to her voice. If that is what you think then okay."

What does this mean for me? NOTHING.... At first I was upset, cried, wanted to go into my bubble because this lady felt that out of forty minutes she could judge from that.  The testing was no where near to Children's Hospital previous testing.  The road keeps going from here.  Our children are given to each one of us for a reason.  S was put into my life so that I could bless her.  I am her advocate.  I don't wish to label my child, I wish to help them succeed in life.  I called Children's Hospital, I will pay there big $$$$ and have her 6 hour evaluation done.  If they say it's nothing and it's this then so be it.  But I don't think that is what will happen.

I don't have a support group of parents behind me but, I know that people in my shoes read this blog because I see the stats.  My thing to you is, I could use your support now to tell me that I'm not alone that to keep going and that I know my daughter best.