Monday, October 25, 2010

My Son Is Not Mentally Retarded

"If you start from the perception that someone is mentally retarded, the expectations for that individual aren't going to be very high".  ~ Autism Spectrum Disorder: The Complete Guide by Chantal Sicle-Kira, Temple Grandin

I'm anxious to get this blog going because I want people to know how difficult it can be for parents raising a child with special needs.  I also think the challenge is greater when our child comes to our family through adoption.  Those who aren't in the adoption community might find the idea difficult to grasp.  One must first have the experience before they can begin to understand.  I will go out on a limb by saying, my challenges are greater because my husband and I chose to adopt outside of our race.  And, our situation is compounded by living in a homogeneous community.

Nevertheless, due in part to the legacy of slavery, racism and discrimination, African Americans as a group remain at a pronounced economic, educational and social disadvantage in many areas relative to European Americans. Persistent social, economic and political issues for many African Americans include inadequate health care access and delivery; institutional racism and discrimination in housing, education, policing, criminal justice and employment; crime, poverty and substance abuse ~ Wikipedia ~
It is my perception that institutional racism is a significant concern regarding my son and the school district where I live.  There are subtleties of this type of racism.  For example, when we first entered this district, my son was starting kindergarten.  I was eager to see the classroom prior to the first day.  When I went to look around, I saw children's names set up like a train.  My son was the "caboose".  Now that might not seem important but if your child is a minority, it might send up a flag.  It's something I noted in my mind that left a lasting impression.

Since the beginning, Aren has been labeled by the special education teacher as "slow to learn".  She is also the one who consciously or subconsciously decided my son is the "caboose".  This teacher also told me that my son's IQ would go down.  Did she have it set in her mind, my son would not succeed.  And, in doing so, help to justify that she need not put as much energy into his education?  At a CSE subcommittee meeting last year, I overheard this same teacher saying, "I don't get it" as we were advocating for better services for Aren.  What exactly didn't she get pray tell?  Was it difficult for her to comprehend that we, Aren's white parents were fighting so hard for a child that not only was not of our blood but also not of our race!  Again, if you don't know what it's like being in a multi-racial family through adoption living in a homogeneous community, this might be difficult to appreciate.

This past April, I advocated heavily for the school district to provide an IEE - independent education evaluation.  I was able to get the district to pay for it which is no small feat.  Basically, I wanted an assessment of where Aren was at and what would be needed to help further his education.  Aren continues to demonstrate that he is behind by 12 - 18 months which is unacceptable.  I thought, let's get the evaluation to help establish where the gaps are so we can address it.  It seems simple enough, right?

I requested Alan Tepp, MD a clinical psychologist who diagnosed Aren with PDD-NOS when he was 4 years old.  Please keep in mind as I move forward, the district paid for the IEE.  The initial meeting with Dr. Tepp consisted of a family interview and a separate interview with Aren.  The entire interviewing process took approximately 1.5 hours.  Then the psychologist visited my son's classroom where he spent 1.5 hours observing.  The "evaluation" didn't consist of separate, independent tests or measures of any kind.  Following the interview, Dr. Tepp provided his "findings:" in a report which he prefaced by telling us "we will be disappointed" with it.  Disappointment was an understatement.  The good doctor essentially, lifted test scores from my son's IEP and based on those and the interviews decided to change his original PDD-NOS diagnosis to mentally retarded!

You might be thinking at this point, what's the big deal.  It's only a label.  It makes a huge difference when it comes to perceptions of an individual and how their educational needs will be served or not.  My son isn't mentally retarded.  Aren's IQ is adversely affected by his autism spectrum disability.  Further, my son was seen by several professionals(past and present) including a recent in depth study by the NYU Child Study center who's findings do not point to mental retardation.  To add insult to injury, the CSE at the last meeting refused to change the IEP classification from Other Health Impaired to Autism.

How does a school district come to decide a classification?  Usually, under less adverse settings, the classification is decided based on professional medical evaluations and the parents.  How can a school district justify not changing a classification when evaluations are compelling?

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