Thursday, May 17, 2012

Privacy: hiding the diagnosis or hiding from the diagnosis?

I hate privacy laws. The purpose is to keep people safe I suppose, but they do not work that way for my two kids.  Privacy laws keep schools from telling people about my kids’ disabilities. A substitute teacher is not supposed to be told a student has autism. How can that possibly work in the student’s best interest? In an emergency the adult in charge, would assume the student had age appropriate skills to cope. At the very least, the child does not learn as much on the days there is a sub if the sub does not know there is a challenge of some kind for that child. 

Tate in Kindergarten
I did not know this when Tate began school. I assumed all adults who came in contact with Tate, in any capacity, would be informed of his disability and educated a little about autism. That is not how it works due to privacy laws. Only the teachers working directly with Tate or Sydney are supposed to be told about their diagnosis and behavior issues. I had to tell my kids’ librarians, music teachers, P.E. teachers, art teachers, and secretaries about their disabilities myself. I even stopped the janitors at Sydney’s school and explained what her disability was and asked them to step in if they saw her behaving in an inappropriate way. 

Sydney and Tate
This year, I insisted both my kids’ IEPs state that substitute teachers have to be told about my kids’ special needs. It became very important to me after walking into a P.E. class when Tate was in third grade. He was crying, rocking and stimming while his classmates were playing a sort of dodge-ball game. It was chaos. At the front of the room was a substitute teacher who had not been told Tate had a disability. At that point, Tate did not have a support person with him in P.E. either. I was still fighting that battle. I could write volumes about the power struggle that went on over para support, and I probably will (but not today.) It is not quite as urgent that a sub be told about Tate’s disability if he has para support with him. However, I would still like every adult who has any part of educating (or keeping Tate and Sydney safe) to understand there is a language delay and behavior issues that need to be considered. 

We live in a very small town and don’t plan to move in the near future. The more people in town who know about Tate and Sydney and their special needs, the more people I will have watching and helping to keep them safe. They are less likely to be bullied by peers, if the peers and their parents, understand my kids have a disability, as well. 

Sometimes schools do not even show a student’s para the student’s IEP. The para works with the child more than any other person. The RR teacher, the classroom teacher, and the para are part of a team. If the para is not “in the loop” and does not even get a look at the IEP how are they supposed to fully understand the child’s needs and the goals set for that child? I have heard the arguments. First there is the privacy policy argument. And second, paras are not necessarily educated or trained as a teacher. Oh brother! If they were not intelligent adults, able to help educate my child, they would not have been hired. If they are not worthy of reading my kids’ IEP then don’t hire them in the first place. It is not a secret that my kids have an IEP. I want them read by everyone so they can be followed. 

I have asked that Tate’s classmates be educated about autism and the schools have been really cooperative in giving Tate’s classmates age-appropriate information each year. I wish there was a way to share information with Sydney’s classmates about her disability as well but how do you explain alcohol consumption during pregnancy to seven year olds? For now, Sydney knows she is adopted. She knows what that means. She knows what her pills are for and what they do and she knows she feels better and is able to think clearly when she takes her medicine. When the time is right, we will explain to Sydney what ADHD is and what Fetal Alcohol Syndrome is. How fair would it be to keep it from her? 

I know a parent who has a child with high-functioning-autism. The kid is several years older than Tate and has more social skills than Tate, and more language. He has never been told he has autism. Now THAT is a privacy policy. It must be a pretty difficult secret to keep. I have chosen to be very vocal about Tate’s autism. How much damage could be done if he did not know? I wouldn’t want to be present the day he found out he has autism, if he was never educated himself about what autism is. Tate hears the word autism every day and has since he was diagnosed. He does not have an accurate idea of what autism is because he doesn’t have that much language comprehension, but if he did, I would explain it all to him and be happy to. He does know he has something called autism. He sees he is different than his peers and he knows he needs more help than his peers.  He can see them doing lots of things he cannot do and he sees them understanding things when he does not. Writing those last two sentences caused me to stop and think: Tate probably has a pretty good idea of what autism is.

This is a post explaining how I educate Tate's classmates about autism and how helpful it has been: What is Autism? or Why Does Tate Act That Way?

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  1. Love this. I am so not a hide-the-ball person, and truly believe knowledge is power. Great post!

  2. I agree with you, but my husband is still struggling with his comfort level on having people know about our son's ASD diagnosis. I feel if people know about it then they are more likely to be helpful when he is in crisis, and not just assume he is an unruly or disobedient child.

  3. This is a really great post, Lisa! Thanks for sharing it again. My 12 yr old asd daughter doesn't understand what autism is and when we ask her if she thinks she is different, she says no.

  4. That educational system needs some revamping for the real world

  5. My 15-year-old was diagnosed when he was 10, and maybe a year later he asked me why he struggles with words, so my husband and I explained his Autism diagnosis to him. He was glad for the explanation and he has become his own best advocate. I can't imagine keeping something like that from the person whom it most affects! Teachers too, as well as any significant adults he comes in contact with, need to know.