Wednesday, May 11, 2011

Autism primer............

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.

15 comments:

  1. HUGS to you all Linda! my middle sister has 5 kids and since Adam was born he was 'different' he wasn't like the other kids and he would easily lash out or freak out. luckily she is a nurse at a sick kids hospital here and between that and an amazing school system where she lives they have bent over backwards to try music therapy, which works wonders for him, and a bunch of other techniques that have helped. the hardest thing was he didn't seem autistic by definition, he commutacates great and he will hug you if he feels like it and he is very outgoing but there was something that my sister's friend who was his teacher mentioned to Sandy about Adam that made her get him checked out. Now they go to conferences and he sees a therapist and he does a lot of cogintive behaviour therapy and he is almost a different kid but still the same little boy who will burst into moon walking while listening to music during class and has problems with being told what to do but wow what a difference in him from a few years ago.
    All my love!!! xoxox

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  2. It's frustrating to deal with ignorant people and a million times more so to deal with those who are wilfully ignorant. Hugs to all, but especially to Ry.

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  3. Linda, this post has left me teary eyed. It also makes me angry. Children need so many things to be able to grow up to be happy about who they are and to be able to cope with all life throws at them. To have someone in the position of authority in this stage of a child's life who is so uninformed, close minded, dimwitted, etc, etc... how do you deal with it? How much more testing do they have to do before things are figured out? On another note, it's great Ry has the opportunity to attend this summer program. Have a great day my friend. Things have a way of turning out good if we can just wait for it to happen.

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  4. Thank you Linda for this post. I know very little about autism and you have really opened my eyes. I am incensed by this so-called teacher that Ry is having to deal with. Good luck with working(fighting) with the system. The summer program sounds fantastic!

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  5. It all sounds so frustrating... wanting what is best for Ry is always top priority....keep at it....that's how breakthroughs are made ...Ry knows that his family is there for him. That is a huge strength. He has an advocate....make sure the system knows....Be a watch dog....make sure the system knows. Love will always be watching out for him. He has a wonderful family at home! Stay strong!

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  6. The more I read about how you and your family handle Ry's situation, the more I admire you and the more I pray for you.

    What a terrible woman that is! And did she send the folder to the other parent by accident? Because if she did it to run her mouth, I would be more than upset; I would make sure the First Amendment smacked her on her intolerant face.

    I wonder about people (in the education field) who don't take the time to pay attention to a child. I would understand her idiotic behavior, if Ry was interactive one day and then withdrawn. However, that is not the case. Can't she see it? Feel it? The is something about a child with Autism that tells a person (who gives a damn) that the poor thing is always about to explode--so full of reactions, but can't put them into words.

    I seriously hope this horrible woman gets talked to. And more than anything, I hope you guys find an appropriate school for Ry.

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  7. Just keep being his advocate and fight the good fight. Don't even get me started on "the system". I'm about to put my boot up it's ass.

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  8. My twin g'girls have learning disorders too. dyslexic for one (b, d, p, and q still give them trouble) but they also suffer from deficient short term memory. where it takes one or two readings for us to remember something, they have to read it about 8 or 10 times. thus reading comprehension tests were a nightmare for them. until they were diagnosed and got the help and extra time they need for those tests, they struggled so hard and felt so incompetent. they are actually very sharp and smart. one of the girls is very good at seeing the big picture. she can look at a scene, at all the little details and instantly she sees how they fit together but has a hard time doing the opposite. taking the big picture and breaking it down into it's component parts.

    My SIL is a special educator and her specialty is autism. I would be happy to put you in touch with her if you would like to talk to her.

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  9. Oh Linda, this hurts my heart for little Ry. What a Catch 22, that an official diagnosis for him might do more harm than good. I'll be sending out lots of good vibes and loves into the universe and hoping that you all can connect with someone that can help the little guy out.

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  10. I often times marvel at the ignorance found in the school systems, but then I know some pretty ignorant people who graduated with me and went into the teaching field. I suppose I sort of had hopes they all would grow up and quit being prejudiced and dull as they went through college, or drop out, but then I guess that was naive on my part.

    Ry's 'teacher' sounds like she could use a size 8 boot up her ass. Just give the word and I will plant mine right up there. If you can't listen, attend to or attempt to understand the needs of your students, you have no business being in a position to influence their education and well being. I'm childless and this gets me all riled up, I'm keeping Ry and his obnoxious teacher in my prayers, may he find solace and a good teacher and she pull her head from her ass and see the light of day soon.

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  11. Thanks for all the love and support. Ry of course was very pleased that he had his picture up there for all of you to see. He told me that I had a "really cool" looking picture to share with my good lookers....you see I call you lovelies, he translated it to Ryleigh language.
    So thanks all you good lookers. Gotta love it.

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  12. Well I'm going to try again to leave a comment. This morning,Blogger would not recognize me.It kept calling me anonymous.
    Everyone needs to be more informed about autism and think it is awful one must chose between getting services and a label.
    Keep fighting.

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  13. Linda, I am so sorry for Ry! I truly hope he gets the help he needs! I would kick that horrible woman in the ass!!! Take Care! "Good Lookers" so cute!!!

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  14. Ugh, stupid teachers are a PITA! My dad is still seething about one of my infant school teachers 27 years on lol Hope the summer programme is great for him, and that the ADOS testing helps him get much better schooling!

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  15. Linda, you are an amazing grandmother and such a needed warrior on Ry's behalf. I hate what the school system has done to cause more harm than good. It breaks my heart that he has had to endure beatings, rejection and blame in the hands of those we are forced to "trust" our children with. They should be ashamed of themselves and get on their knees to kiss your ass in the event you decide not to sue them. I am so happy to hear that he will be part of a summer program that will embrace him as the precious child he is. My blessings and support to you, my dear friend.

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