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.

The Cycling Life

 Janey turned 18 last month.  I would have pictured myself writing a post about that, talking about her becoming an adult, reflecting on her childhood.  I found myself unable to do that.

It hit me today what made it so hard for me to write about the milestone in Janey's life.  It's the lack of forward motion in her life, and ours.  Janey changes, all the time, but the changes are cycles, for the most part.  There are many Janey modes---very happy Janey, talkative Janey, sleepy Janey, crying Janey, quiet content Janey, no-sleep Janey, manic Janey---and there have been, right along, since the regression and start of her autism, when she turned three.  Days today, with the exception of her being older and bigger, could be days when she was 3, or 7, or 12, or 15.

I'm sure some who know Janey will say, and probably rightfully so to some extent, that that isn't true, that she's made progress. And who is to say what progress is?  But at a very basic level, she hasn't.  I think we've learned about her more, we understand her more, we know so very well what makes her tick, how to best respond to her varying states, how to keep her happy more of the time than not.  But progress?  I'm really not sure there has been much of that.

Does it matter?  In some ways, no.  We aren't holding Janey up to some standard that just doesn't work for her.  We aren't working toward a goal that will never happen.  She won't hold a meaningful job, she won't live on her own, she won't get married or have children, she won't drive a car or read books or go to college.  Much of progress is working toward goals.  The kids she started school with are going to college now, preparing for careers, maybe meeting their future spouses.  The progress they have made over the years has led them to this point.  I don't think it was ever in the cards that progress Janey made would do the same---so does progress matter?

The last few days have been in the mode of one of Janey's toughest personas.  She is not sleeping, she is crying half the time, she is pacing and volatile and demanding.  But we know it won't last.  She will pass into another mode---maybe the sleeping all the time mode, or the cheerful but quiet mode, or the rare very talkative and happy mode.  That's the flip side of cycling rather than progress.  Progress, if you think of it as permanent change, could mean that tough behaviors will never go away, and we have learned that with Janey, if you wait it out, they do, at least for a while.

I think why it's hard for me to admit to myself, why a 18th birthday sum-up was something I couldn't write, is because in some ways, we as autism parents are sold a false bill of goods.  I don't think anyone is doing this on purpose.  It's more how we are as a society, and so maybe it's automatically the standard we apply to kids with autism.  We believe that with the right education, the right attitude, the right therapies, the right parenting, the right foods, the right medical care, the right everything, our kids will progress.  We tell that to new parents with autism. And for some kids, it happens, and they attach a causation.  They assume the progress is because they did the right things.  But I'm here to say---that might not be the case.  You can do everything right, and your child might still not be toilet trained at age 18.  They might not read.  They might not talk any more than they did as a toddler.  They might not be able to do basic tasks of adulthood like walk to a store by themselves and buy something.  On the other hand, you might do nothing that is supposedly the right thing to do.  You might be the most hands off autism parent in the world, and your child might undergo a total "cure".  I honestly, truthfully have come to believe that's the nature of the autism beast.  There's a natural history of each person with autism, one we have very little control over.

So---what's the deal here?  Today, because of lack of sleep and days of trying to keep Janey from crying, I feel pretty down.  But overall, I don't think the message is totally a negative one.  I think it's one of acceptance, acceptance that goes beyond the lip service sometimes given acceptance.  Janey is amazing.  She's one of the coolest people in the world, one of the most interesting people, one of the most fun people.  She makes me proud every day.  And that isn't because of progress.  It's because of who she is and always has been.  That doesn't mean life with her is easy, or that we don't need a lot, lot more help that we usually can get.  It means we value her for being her, not for meeting goals or checking off milestone boxes.  

Happy birthday, Janey.  Welcome to adulthood.  It might not look like most people's adulthood, but it's just as valid, and valuable, and we celebrate the memory of your childhood and look forward to knowing you as an adult.