I can remember when Avery first got his diagnosis and hearing words that might as well been spoken in a foreign language.
IEP. FBA. ABA. EIS. PRISE. IDEA. 504. CST. I & R S. RTI. W – T – H ?! The initial meetings with Avery’s specialists, therapists, teachers, and case managers got on my nerves. The people and the meetings got on my nerves because it seemed like they were usually talking to each other and not to me. My experience gave new meaning and dimension to the concept of the Invisible Man by Ralph Ellison. I felt like an outsider. I felt overlooked. I was frequently annoyed, while simultaneously overwhelmed. I also felt guilty and defensive. I felt guilty because when my son was diagnosed with autism, I was working as a high school counselor. I felt like I should have been much more aware of how complex the experience of walking into a school building, meeting a bunch of specialists (who were like experts in special education), and being handed a 20-something page document REMINDING me of all the areas in which my son was not developing typically. Unfortunately, I was not working as closely with special needs kids where I worked. So in those early meetings, I was just waiting for someone to say, “Mr. Hannon, aren’t you a guidance counselor? I assumed you KNEW more about this process.” Wasn’t too proud of that. And now, I was in the position as the parent of a special needs kid. But, not just the typical parent who comes to these meetings. You see, even when I did rarely attend meetings for special needs kids in my job, I NEVER (ever, ever, ever) saw dads in those meetings. And, honestly, my son’s team of professionals could probably say the same thing when they saw me. Dads were usually likely absent for a number of reasons – from work restrictions to just not having a direct role in their kids’ lives – but I didn’t want that to be my story. My goal was to not let anything stand in the way of my being present and actively contributing to this process, even if my presence represented something new to Avery’s team of professional or for me. Then, there was the language barrier. I was overwhelmed because the folks used language like I was a native speaker. Not so much. I knew that an IEP (Individual Educational Planning) meeting was the meeting when the parents and the team got together to discuss the kid’s progress, goals, and range of services. But, when they started talking about FBAs (functional behavioral analyses) and reports from EIS (early intervention services) to determine what types of interventions provided by the ABA (applied behavioral analysis) therapist would best suit Avery…and then turn and ask me what I thought… *crickets* After noticing my hesitancy, they learned to immediately look to my wife for that kind of feedback. In the moment, that made us ALL more comfortable. But, over time I knew I had homework to do. I would have not just any “say” in what was happening. I wanted to have an “informed say” in this process. When the pace would get too fast at our subsequent meetings, I would work up the courage to stop everyone and say: Um, I don’t know what that means. Would you say that differently or elaborate a bit? Thankfully, over time, I’ve been able to get a better handle on the CST’s (child study team’s) role in helping my son realize his educational potential. And, I’ve become much more aware of PRISE (parental rights in special education) so that I don’t always feel like an outsider who doesn’t know the code of special education. I imagine that many parents and caregivers of special needs children are forced to learn the language of special education. If they don’t, they run the chance of feeling overwhelmed and overlooked in the planning and administration of their child’s educational support services. Counselors and other mental health professionals know that any group has its own set of group norms or values, which are spoken and unspoken. It’s now important to me to help make those norms more transparent, while also shape them to be a little more inclusive. Easy as ABC, right?
7 Comments
Clarence
11/25/2012 11:52:33 am
Well written. And good luck with your son.
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11/25/2012 02:03:06 pm
We on it, Clarence. Thanks for checking in.
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Chieko Richardson
11/25/2012 03:38:42 pm
An another amazing read!!! Well said cousin Mike... U too have a team of supporters ... Secretly admiring your family's success!! Love you brother and keep being an amazing father, writer, and scholar for us MUCH younger cousins to follow and learn from;)
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11/26/2012 03:29:22 am
Hey Nikki-
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Kyle
12/3/2012 03:18:25 am
Very interesting read! I remember attending the IEP meetings for clients and beginning to feel as if Charlie Brown's teacher was facilitating the discussion. Fortunately I am in a better place of understanding now. You know that you and The Hannons always have my support and thanks for sharing because I am definitely learning!
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12/3/2012 11:12:35 am
I'm glad you could relate to this experience, Kyle. It goes without saying that the mental health professionals who work in educational settings absolutely need to be competent and confident in these areas. Thanks for contributing. I appreciate it.
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Dr. Beverly J. Hutton
12/9/2012 02:02:03 am
As a former high school administrator, I must say that I didn't always realize the affects that the alphabet soup language (educationeese) can have on people dealing with the complexities and nuances of the education system. I will be more sensitive moving forward.
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AuthorI'm Mike. If you have an interest in mental health, family functioning, and disability advocacy, this blog may be of interest to you. Archives
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