Wednesday, October 5, 2011

Private vs. public

Privacy.  Interesting concept.  Not so much of it anymore.  Except when school uses it as a reason for parents not being able to observe a program as they try to identify appropriate placements for their children.  But I digress.

Privacy.  I can't see that I've ever been particularly private about my son or his dx or issues or education.  Except to the newspaper reporters twice, once a long time ago and once again today.  I was contacted because I coordinate the Autism Spectrum Support Group of Southern Maryland.  I answered the reporter's questions except those about my son, saying only that he's in high school and that we've been dealing with the school system for 11 years.  But the rest?  I answered.  Sometimes freely.  Sometimes very, very carefully.  How do you say it straight but without offending?  It's a flat-out fact that though there have been improvements in our county's educating students with ASDs over the past few years, there is still room for more!  And oh, the need for more!

Privacy.  The support group maintains a closed listserv for parents and caregivers of people with ASDs.  It's "closed" because of the privacy and dignity of our children.  But I think I can share here that one of the threads that has been going on the listserv is about how the three counties here, but especially my county, have not only been denying the medical label of an ASD -- they can do that -- but have also been saying that the child doesn't have any educational needs and therefore won't receive an educational label of autism or special education services.  Our children are impaired in the social arena.  As soon as you add another person, it's social!  To be prepared for further education, employment, and independent living, our children must be taught social and organizational (including job) skills.  If they are "OK" behaviorally or academically, that doesn't mean that they don't need.  (Some people, especially from one of the other counties, have said that they are being told that their school system won't do much of anything before 3rd grade, thus allowing children to suffer needlessly.  And illegally.)

Publicity.  I think it's time to act.  Parents can contact their SECAC representative (CACSE rep here in my county).  When it's clear that this is not a personal problem but rather one that impacts a group of students, SECACs can advocate for change.  At a minimum, SECACs can cast a light on it and make it public.  Once uncovered, it can't be hidden again.  Once uncovered, the chances that a school will continue the practice are reduced.  Once uncovered, parents struggling with the ASD needs of their children won't be blindsided by a practice that denies children the help they need.

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