Saturday, February 13, 2010

Under The Influence of a Diagnosis

What if, when your child's Individualized Education Plan (IEP) packet was distributed to potential service providers, there was no diagnosis provided right up there on the first page and in the top 2 inches of information along with your child's name, date of birth and address? What if every potential educator had to actually read through your child's entire IEP and evaluations to determine what his/her functional abilities/disabilities were before deciding whether and how they could meet your child's needs?

That actually happened to us!

When the boys made their transition from Early Intervention to the Committee for Preschool Education (CPSE) at 3 years of age (plus however many months bridge you to the following September), our CPSE accidentally left the line for Diagnosis blank in the service request packets they sent out.

Think about that!

I'm certain I'm not alone in believing and having personally experienced discrimination by diagnosis. Interestingly, it didn't happen this time -- at least not initially -- and in my opinion. When the boys' applications to providers were distributed, all but 1 school (apx. 11) contacted us about program and space availability. They all "accepted" the boys based on their written evaluations which outlined their abilities and disabilities. We eliminated half of these providers because they did not have availability for both boys in the same class (something we'd decided was right for them). And the remaining providers acknowledged and accepted my desire for an integrated setting, encouraged us to visit their facility and requested a face-to-face meeting. Some were outwardly surprised when I finally mentioned that my boys had Down syndrome (not having ferreted out that information hidden deep within the text in a very few innocuous places in their evaluations). Only one of the visits we made resulted in outright discrimination by diagnosis, with the boys being declined based on the decision-maker's concern about their normal-3-year-old attention spans as measured in the evaluations and observations performed by that school, with the telling comment "I tried very hard to disregard their diagnosis when making my decision."

[Between you and me, I'm convinced she failed to actually do so and made her decision based on her generalization of their diagnosis to them and not on their individual abilities!]

I'm not certain the results would not have been similar had the diagnosis been provided right up front on that first page. But, from what I've heard from others who've gone through this process and whose diagnosis was not accidentally omitted, an 11 out of 12 response and acceptance rate is phenomenal... especially when considering we were looking to place 2 children in integrated classrooms pretty late in the school year. Perhaps, my boys' abilities spoke for themselves instead of their diagnosis speaking for them. Perhaps the absence of an obvious diagnosis gave reviewers the opportunity to get to know my beautiful and capable boys first... and to learn they had Down syndrome second.

We'll never really know... but I know what I think and what I feel actually happened.

I wonder if there's a way that people in the position of judging, placing or educating my boys could actually SEE, MEET and/or TALK WITH them before making decisions based on what they see written on a piece of paper. No amount of words could accurately describe them and certainly no diagnosis could do them justice. As such, whenever possible, I bring my boys along to meet the folks in the position of making these critical decisions. I've even popped in unannounced with the boys in tow to see the Committee Chairperson in our school district a few days or weeks prior to our meeting-- under the pretense of asking a simple question -- just so she has the individual in her mind, not just a name or diagnosis on a piece of paper when the actually decision-making process is undertaken. When that's not possible, and actually every time the committee meets, I bring a picture and tell a cute anecdotal story that introduces the group to the essence of who these wondrous boys of mine really are. I want no more, and will accept no less, than the services they need to succeed and are entitled to receive based on their abilities and disabilities... NOT based on someone's preconceived and usually erroneous notion of what their diagnosis means!

Have you encountered discrimination by diagnosis?


  1. Other than the usual generalizations not that I've noticed. Actually, sadly it seems easier to have a clearly identified dx rather than one like autism where they make you jump through hoops to prove that someone even has the dx! Easier in the sense of accessing services. On the other hand, getting others to see my girl and her potential- we didn't have to apply to schools so I couldn't tell. Your boys are certainly adorable! I'm glad they will be in class together!

  2. Starrlife -- In the world of services, I think you're right about having a diagnosis in place... though discrimination and generalizations do happen as a result. We are offered, more or less, the package deal for Down syndrome. However, in the general population, my children wear their diagnosis on their faces and so, sadly, are judged immediately and usually wrongly without even a second's opportunity to prove themselves to be the unique individuals they are. Children w/o obvious diagnoses may get that second to be themselves before the world labels and boxes them in.

    Not sure which is better for them.

  3. I'm delighted with the result for your boys. It is so sad that prejudgment based on someone else's opinion often leads to poor choices. Let's hope this continues and the boys are always given a chance to be mainstreamed as much as possible. That said, I think we're all victims and perpetrators of (often erroneous) first impressions, which then take months and even years to get past. I don't know what the answer is; I wish I did. Thank you for sharing.

  4. Wow, great post. I think many people have certain perceptions of what Down syndrome means and if the diagnosis had been at the top of the page, would they have actually read every word and really looked at your boys' abilities vs. a diagnosis?

  5. Hi, I'm part of the Oz Squad and found your blog through there.

    Nice to meet you.

    Windmills and Tulips

  6. I just came across your blog after seeing your comment on the OZ squad. I LOVE your blog, I hope you do not mind if I link to you from my sons blog - Boston was born 10 weeks early at 2.3 pounds it was at 7 weeks we received our DS diagnosis. I look forward to getting to know you cvia the web!!