This morning we attended the transitional meeting, the first step in transferring the source of Finn’s services from Regional Center to the school district, and putting together an IEP (Individualized Educational Plan) for him. Present were: me, Michael, Finn, our service coordinator from Regional Center, a school psychologist, a school psychologist intern, a SLP (speech/language pathologist), and a special ed teacher. We were outnumbered.
I’ve been dreading this whole process for a very long time. The truth is, ever since we dropped early intervention services for Finn back in November, I have savored having him all to ourselves – absent has been that feeling that third parties who don’t even know him or love him like we do claim some part of him, or some right over him, or some “we know best” over him – and just letting him be him, accepting and loving exactly who he is without a lot of angst over what he should or could be. He has thrived on the love and inclusion and exposure to experiences that he gets just by being in our family, and he has continued to make forward strides in all developmental areas – slowly, yes, but forward all the same. So I knew that the transition process would burst that comfortable bubble.
All the same, I wanted very badly to go in to today’s meeting with a cool head and an open mind. Yes, I’ve been leaning against sending Finn to preschool anytime soon – especially developmental preschool – for a number of reasons, but I was determined to hear them out and see what they had to offer/recommend before making any decisions. Throughout Early Intervention, I never felt that we and “they” (Regional Center, therapists, etc.) were truly on the same team, and I really wanted to begin our relationship with the school district with a feeling of solidarity, everyone seeing Finn as a unique individual and making his best interests priority.
Unfortunately, we didn’t get off on very positive footing this morning. We were under the impression that this was going to be a “Transitional Meeting,” where we would be informed about the process of transitioning Finn to the school district, informed about assessments they would recommend – in other words, an informational meeting. Instead, we got there and were faced by a table full of people who introduced themselves, put a consent form in front of us with boxes already checked indicating what assessments they would be doing, clearly expecting us to just sign it so they could begin the assessments right there on the spot. So right out the gate, there were adversarial vibes.
Out of the following assessments they wanted/expected to do . . .
SOCIAL/EMOTIONAL BEHAVIORS STATUS
. . . we only consented to:
. . . and we requested an OT/Fine Motor Skills assessment.
I understand that they need to figure out what skills and abilities Finn has in order to determine what therapies and in what setting will be most appropriate for him. However, we see no need at this time to have a school psychologist evaluate his intellectual abilities, social/emotional status or the like. He has Down syndrome; it goes without saying that he has cognitive impairments. However, having a label of “mentally retarded” or “developmentally disabled,” or an IQ number, or a prediction of how well he may do in school (this is actually under the description of the Intellectual Development Assessment: “reflect learning rate and assist in predicting how well the individual may do in school.”) put in his permanent file at this early stage, to follow him from here on out, isn’t something that I can see benefitting him. As far as Health/Vision/Hearing, Finn is under the care of a regular pediatrician; we don’t need the school assessing his health. This is not us just bucking the system; we know Finn better than anyone, and are in the best position to decide what he needs. It is our belief that if his main areas of deficit are supported (speech/language and fine motor), the rest will follow accordingly.
They were taken completely aback when Michael and I balked at just signing the consent form as is. They were taken aback when we asked why the consent form with descriptions of the assessments they expected to do wasn’t sent to us ahead of time so we could have an opportunity to go over it, talk about it, and decide what we wanted to do. They were taken aback when we asked to be excused for a few minutes to go outside and discuss it in private. But that’s what we did. In the end, we consented to just a couple of assessments, completely eliminating the need for the school psychologist’s presence at all. I would have liked to be a fly on the wall inside when Michael and I were outside. I imagine the conversation went something like this: “Cute kid, asshole parents!”
When we got the consent form out of the way, we agreed to let them get started on the assessments. As a small act of rebellion, I pulled out my phone and started video-taping, knowing full well that they wouldn’t like it, but waiting for them to tell me to stop, which they did at some point (something about confidentiality, which I think in actuality would be to protect Finn, not them, but whatever), but not before I got this footage:
Nothing earth-shattering, but you can see how cute Finn is.
Anyway. It’s not that I think their assessments can change who Finn is, it’s just that I wish they – everyone – could see him for the wonderful, unique little boy he is, and not, as my friend Chrystal so aptly described, just another case to work. I don’t want to stick him in “the system” only to be pigeon-holed and managed, with everyone just biding their time until they’re done with him, never really expecting him to be anything more than another Down syndrome kid who will pass through.
Many thanks to my friend Lisa from Genetically Enhanced for being available by phone and being willing to provide a wealth of information and moral support.