I must confess to you that I am one of those adults who can't help but playing Nancy Drew when it comes to things that affect my life. I also must confess that I have been perplexed, puzzled and just plain mad at some of the misinformation that is out there about Autism spectrum and individuals who are affected by Autism no matter where a "professional" places them on that spectrum.
Whether a person is profoundly limited by their disorder/difference (and I hate using that word) or not, Autism is a communication centered situation. It's not that an Autistic child doesn't want to communicate, they have trouble, in oh so many ways, doing so. Kids on the spectrum see, hear, smell, taste and feel stimuli, much like if we were to wear a kaleidoscope for glasses, and a hearing aid with feedback and overwhelmingly noxious odors. Taste is so acute that's why so many are picky or one note eaters and almost all have issue with being touched. Now that would be today, tomorrow any one of the senses can shift gears and do something completely different. The only consistent thing about Autism is inconsistency.
I admire anyone who can navigate life anyway but you add the huge boulder put in a person's backpack (Autism) to that and you have people who I think are miracles on two legs. And Ry is for the most part, a very happy little boy.
We still have no "firm" diagnosis for Ry. What that means is that after all the professional therapists, shrinks, specialists, education panels he has endured, he is without a diagnosis. That means that he is not receiving all the help he needs because without a diagnosis, no services. With a diagnosis he will have a label the rest of his life (and it could be the wrong one).
At the beginning of my renewed involvement in his life (in August 2009), I was so uninformed as to what Autism was. But then it is one of those changing criteria diagnosis disorders/differences. So very much has changed in the just the past two years of my learning curve.
But I must say that nothing has cut through the crap of blah, blah, blah than a DVD that Shelley received from the last Dr. type she and Ry visited. This educator, Marian Joiner, Autsim Spectrum Disorders, "What every parent should know" has given me more concrete ways in which to communicate with my grand than two years of my hunt and peck, read, trial and error.....lots of error.
Ry is to have had an ADOS evaluation next week and see afterwards if we get a call from his "crusader" in the Special Education department of APS. I truly wish I could get rid of this feeling that the only reason this person is helping is so we won't sue the school system and these are the reasons why I feel this way.
Remember Ry was warehoused with profoundly limited youngster's last year and was beaten by another little boy almost weekly. And then we would be lied to and because we wanted to believe they were being true to their word we acquiesced to them. Then changed schools at the beginning of the year and within the last month found out that the person who has been "teaching" him is not even a teacher but an intern without supervision. Please don't think this a prejudicial statement on my part, it is my truth. This female is young, black and christian. She is afraid of us because we are a non traditional religion family and wrote in Ry's send home folder that she thought he was part of devil worship because of the "evil" drawings he draws. Then instead of sending the folder home to us, she sent it to another child's parents. Shelley has provided this fool woman with websites, books, CD's all on Autism and it is painfully obvious that this person is not affording herself the information given to her.
Yeah, I think this way because she keeps sending home reports on Ry at least 3 times a week about: not sitting still, not paying attention, not making eye contact, not following directions, not cooperating, not answering questions that she has no bloody clue of any of the "ticks"of Autism. And the most hurtful part is that he has told us, the counselor and the principal that his teacher doesn't like him.
With my new found "oh no you didn't" attitude, after the ADOS testing, I would like to walk in and tell her it would be easier for her to stop being black than it would be possible for Ry to not have Autism and behave like a "normal kid". It seems as though the whole system is clueless and heartless.
One really wonderful opportunity for Ry is that he will be going to a summer program through Albuquerque Parks and Recreation called "theraputic recreation" for kids with all levels of differences. So he will have more opportunity to try to communicate with other children.