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A system that only rewards those able to be demanding

A system that only rewards those able to be demanding

 I recently read a report a consulting firm wrote about an investigation they had done into a now closed school that had been part of the Boston Public School system.  None of my kids went to the school, but I read the report with interest as it was addressing larger problems within the district.  In the report, I came across this passage…  “Finally, we found that BPS’s current practice of more urgently addressing SPED
issues or “crises” when they are raised by vocal parents results in an inequitable system within
BPS where certain families are at a disadvantage because they may not be aware of this option
and/or able to advocate for their children in the same manner.”

Wow.  That hit me hard.  It brought back, vividly,  different times when I know that Janey missed out on help and services she should have gotten, because I was not one of those “vocal parents”, because I didn’t know how to forcefully push the district to address her needs urgently, because, as I’ve always seen it in my own mind, because I failed Janey with my own lack of knowledge or wimpy nature.  But reading that sentence, I was hugely struck by how unfair it is to expect parents of special needs children to both know what to advocate for and also to know how to advocate in general.  And I had a lot of advantages that many parents wouldn’t have had—I speak English, I have a college degree, I’m fairly well-spoken.  Imagine if I were none of those things.

When Janey was first diagnosed, she was in a half day Boston Public Schools preschool.  She was there because she had a sibling preference, as her brother Freddy was a student at the same school, and she started, at age just turned 3, as a regular ed student.  When she was diagnosed, a few months after starting school, we called for an IEP meeting, which was held pretty promptly.  At that meeting, we were told verbally that the next year, when she was 4, for what Boston calls K1, 4 year old kindergarten, her needs were such that she would go to school all day, not half a day.  We didn’t push for the whole day to start right away—I was okay with waiting until she was 4.

However, at the end of her 3 year old year, I was told that she wasn’t going to get one of  the two full day slots in her class, that the slot had been given to someone else.  

I was very upset, of course, but I didn’t insist or scream or call everyone I could think of or demand.  i should have.  But it’s not my nature, and I also didn’t want her moved to another school that DID have a full day slot.  I loved the school she was at.  I did ask hesitantly why they couldn’t create a 3rd slot, and was told that “just wasn’t possible”.  

The slot went to another child.  I won’t get into any details about that, but it was pretty obvious the other family did the things I didn’t do—demand, threaten to sue, make their needs very strongly known.  That is what I should have done.  Or that is what I’ve always told myself.  But why?  Why wouldn’t the schools just do the right thing?  Why did Janey getting what she needed depend on me being a parent who was informed as to what I had a right to, knowledgeable about the right people to call, and also willing to not worry about hurting feelings or alienating people?  

At that first IEP meeting, we were told that Janey would be assessed for ABA services.  That happened—about a year after we were first told it would.  The IEP services finally started a full year and a half after the IEP meeting.  I was told, over and over, that the district was swamped, that they just didn’t have the resources necessary to do an evaluation, to say nothing of offer ABA.  Again—I let it go.  I mentioned it off and on, but I easily accepted the answers that it just wasn’t possible.  I don’t know if earlier ABA would have made a difference or not.  Over the years, the ABA services Janey has gotten have been (mostly) delivered by well meaning and kind people, but the providers seem to constantly change and to use widely different approaches.  I’ve been very pleased with the last few years, finally, in high school, with Janey’s ABA services, but did she miss some kind of crucial time for help because I didn’t demand she gets services for that year and a half when she was so young?

I should have demanded more.  I tell myself that all the time.  But WHY?  Why isn’t the system set up to HELP THE CHILD WITH SPECIAL NEEDS, not to reward those with loud voices and special abilities to navigate the system?  Special needs kids occur in all kinds of families.  Why should Janey has missed out because we weren’t good at demanding?

I’ve gotten more knowledgeable over the years, and I’ve gotten better at being persistent in getting what Janey needs.  I’m still not a pro at being demanding, and I probably never will be.  But in those early years, I was about as weak an advocate as I could have been.

Reading the sentence I read tonight in that report—I can’t tell you how much it resonated with me.  It was like someone had finally seen what I had seen all these years—a special ed. bureaucracy that seems to exist to deny help, not provide it, unless they are faced with a very specific kind of parent—one with the resources, knowledge, means and personality to get what their child needs.  Boston schools have come close recently to being taken over by the state, and part of the reason is the problems in the special education central office.

The poignant part of this is that despite the lack of support from the higher level people, the rank and file of the Boston special ed. educators are truly some of the finest people you could possible imagine.  I can’t even start to tell you how wonderful most all of Janey’s teachers have been, as well as her aides, her therapists, the school staffs from top to bottom including the clerical staff, the cafeteria workers, the principals, the IEP team leaders—I am happy to count many of those people as friends, and Janey and our family are so lucky to have them.  And they are as unsupported by the bureaucracy as we are.

I know this isn’t just a problem in Boston.  It’s a problem that exists all over, and until we decide that we will put children first, and give them what they need to succeed, it will keep existing.  Let’s have a system that, instead of waiting for the demanding voices to demand, listens instead to the unspoken needs of those who, for so many different reasons, don’t demand but so much need the help.

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