They heard us now….

Yesterday, finally, we had Danny’s CSE (Committee on Special Education) meeting. It ended well – Danny got the placement that I would want for him, and when I would want it, given where we are now in the school year. More importantly – much more so – his ED (emotionally disturbed) label was removed from him.  His classification is now what it always should have been: Other Health Impaired (OHI) which is accurate given his need to have his diabetes constantly monitored.

But here is how I prepared for this meeting. First, I hired a CSE advocate. A calm, reasonable, brilliant strategist. She planned everything out; met with Danny and spent time with him, researched the law, and most important for me, she came to the meeting with me and advised me and the CSE every step of the way.  She gave me a big break on her fees, but still cost me hundreds of dollars.   She, in turn, referred me to a human psychiatrist.

Human psychiatrists are in contrast to the mechanical-by-the-book ones.  They are also much rarer. This one has her office one hundred miles from here. The psychiatrist meets with Danny and I first; then she meets with each of us individually. Then she attempts to get a handle on the whole picture, including all the horrific paperwork.  Lots of time on her part. Close to a thousand dollars – so far – on my end.

Then I asked my county caseworker – Danny is still technically a foster child – to attend the meeting by phone. She, in turn, asked her supervisor, the county director of adoption to also attend.  Not an easy thing to arrange given folks’ caseloads. But both of them attended (by phone) for the hour and a half meeting. That the supervisor pointed out that sometimes the family court judge has had so subpoena CSEs into court did not go un-noted by the head of the meeting. The judge would want to know why the child is not in school after so much time has passed. Well, it did not go un-noted by me that the head said that the CSE was very familiar with that kind of thing. Uh-huh.

And then there was Danny’s home schooling teacher, who gave an honest and full report on how Danny has been with her all these weeks. Her evaluation meant a lot, naturally, to these school folks and she pointed out that he could handle a regular school program.

I don’t suppose it hurt that I requested to tape the meeting. Of course, that couldn’t be approved until the school came up with their own machine to also tape. Mine was electronic; theirs required them to hunt down a cassette.  But tape it we finally managed.

And then, of course, there was me. Well aware of what I wanted; well aware of how I perceived Danny’s experiences the past two years – and articulate about both.

So it worked: they heard us now. Finally. All’s well that ends well and all that…..

But what if I hadn’t had a home equity line of credit to pay for these outside experts? What if Danny’s teacher was a cynical person simply waiting on her retirement date? What if the county didn’t participate? Or didn’t show their strong backing up of Danny and I?  What if I weren’t articulate? What if I knew nothing about these things and simply looked to the so-called experts to guide me through?  What if….any of those things?  Danny’s future should depend on all this?

And all because of the horrific reports that were sent onto the local CSE?  Reports done by very well paid experts. Reports that talked about Danny so that he was inevitably seen as essentially broken, damaged, and, by implication, no good. Not reports like I would write that require perspective, and hope, and, believe it or not about me, humility. Fr. Huntington defined humility for me decades ago as simply recognizing and defending the truth. Interesting definition, although I have probably distorted it in my memory.

Family Focus Adoption Services, where readers know that I work, has a rock bottom principle called the “Forty Year Plan.”  What it requires us to do is to look at the impact of the decisions we make now – on our kids or the families we work with – forty years from now.  That rule makes us look at things deeply, widely, and long long term.  Most importantly, it makes us look at things personally.  And that is what makes us stand heads and tails above any agency I’ve ever seen.  It also shows that it can be done.

The CSE did that long term perspective yesterday.  But do they do it routinely? Or because of what I brought to the table?  I don’t even wonder……

I don’t imagine there will be a need for me to write about Danny again. He’s now a regular kid, leading a regular life,  in a (more or less) regular family. That’s a happy ending.  He’s won the lottery (see last post).

Being his grandfather? So have I.

Jack

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5 Responses to They heard us now….

  1. Another great post, Jack! So happy for Danny and you; so sad that, as you imply, many kids in different circumstances essentially end up fighting for themselves without the good help Danny was able to have now. Well, one battle at a time…. Happy holidays!

  2. Paul Tompkins says:

    He’s incredibly lucky he has you as an advocate. My sister and brother -in-law have adopte4d 1 children, nine of them special needs. Many of them were written off by “specialists” as hopeless. All of them have done a lot better than those initial diagnoses some of them even completing college when the original diagnoses was mental retardation. It seems that the system is set up to throw children away as early as possible.

  3. Virginia says:

    When I finished reading your post I started humming the “Alleluia” chorus. It is profoundly helpful and inspirational. My husband and I are navigating similar waters for our son (first 18 months in a Romanian orphanage). We finally understand that we are the experts in who he is, what he needs, etc.. We are finally taking the lead at school. This time around we are using the wisdom of our experience (and research) and the insight of the right professionals in designing his IEP for the 8th grade. A wise and dear friend told me long ago that “having children is the biggest developmental step of YOUR life, not theirs”. I’m beginning to get it.

  4. Virginia says:

    cont. from above post – I’m learning (and Jack’s post reinforces it) that collaboration doesn’t work in this kind of situation. Therapists, teachers MSWs, school admin, lunch workers, guidance, SPED all need to know what I know about my kid and not dismiss what I know as “not too vital to the situation”. What works is leadership, my leadership in leading the right people in the direction I want them to go. I need to repeat this to myself daily. Bless my son. He teaches me more about myself than anyone else. Thank goodness I love to learn 🙂

  5. Jane says:

    As a participant in the CSE meeting that day, I can assure all of you that this district’s CSE always takes into account the long term ramifications of their decisions. Chairpeople in this district are not on the side of the parent, on the side of the schools, or the district for that matter. As all chairpeople should be, the Chairs from this district are on the side of the students and make decisions based on what is in the best interest of the children. They take into account the data and information provided from each member of the meeting, regardless of tactics strategies, personal agendas, or advocates that are thrown into the mix in a meeting. That day there was a consensus from all present that the student had the ability to perform in a district setting. Furthermore there were compelling arguments from each participant that showed a direct correlation between the student’s history and his difficulties. With the evidence presented and the reports from those who have worked with this student inside and outside of school, including his guardian, it is most likely the decision would have been the same with or without a high priced advocate.

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