Just Keep Swimming

Grace attends a school in an intermediate district.  I had no idea what that meant when I first learned of its existence.  What the heck is an intermediate district? This intermediate district exists to educate all the kids on IEPs that their own districts lacked the resources to educate themselves.  About eight school districts financially support this district.  They pay a lot of money, sort of like a membership fee, so that they can send their kids there.  This district is a bit like a last resort for districts.

When Grace was in need of an IEP two years ago, I didn’t know any parents who had ever heard of this district.  It simply goes by a number.  Like District 007.  I would ask other parents, “Have you ever heard of District 007?” No.  I wondered why no one had ever heard of it, and I also wondered if it was like something out of One Flew Over The Cuckoo’s Nest.  Were all the teachers like Nurse Ratched?

When Grace was in her third hospital setting, District 007 was providing the education for all the children there.  I met one of the teachers.  She was amazing.  District 007, in fact, did Grace’s IEP evaluation by force of our resident district.  Then, I met one of the women from District 007 in charge of all educational services provided off-site.  She was also amazing.  She reminded me that I was the most powerful person on that IEP team, and she even sat with me through Grace’s IEP meeting with our resident school district to make sure that every point was made with clarity.  She wanted Grace to have her IEP.  She then arranged for Grace and me to tour the facility that was to be Grace’s new school, and she met us there to be with us both.  I was in a haze of confusion and awe.  I was not used to be treated with such respect.

The school was simply fantastic.  It was a brand-new facility housing several special programs.  There was a program for pregnant teens and a nursery for their babies and toddlers so that they could continue to go to school and graduate.  That alone amazed me.  When I was in high school, the school staff seemed to go out of their way to shame pregnant girls in order to make an example of them.  There were programs for children and teens on the autism spectrum.  There was a café and store that was student run and, of course, teacher managed, but these “school jobs” were teaching life skills.  There were rooms with kitchens and even laundry rooms so that teens could learn to cook and even do laundry.  Again, opportunities to learn independence and life skills.  The school librarian had a big, black labrador who was a trained therapy dog, and, when students were struggling, they could go for a walk in the school with him.  There was even a therapy bird! She liked to sit on shoulders and groom hair.

Grace’s class had only seven other students, one teacher and two to three paras.  The Nurtured Heart approach was used throughout the entire facility.  There was a social worker associated with her classroom, and she arranged for a woman from Lutheran Social Services to come in throughout the year to teach the girls all sorts of things about sexuality, hygiene, boundaries, safe people, appropriate relationships, and the like.  Honestly, it was a dream come true.  I couldn’t have asked for anything more for Grace.  She is treated with such respect in her environment now, and, when I go to her school’s family nights, I observe that every staff member knows Grace.  They all give her high fives or pats on the back.  The kindness and generosity of spirit there shocks me.

I invited a friend to accompany us to their autumn book fair last fall, and she, too, was shocked.  “This is a public school? I’ve never heard of this place!” I think that’s the point.  If all parents of special needs children knew of District 007, then they would be banging down the doors! I found it very weird when, at the end of the final IEP meeting to approve Grace’s attendance at District 007, the head of our resident district’s special education department looked at me and almost hissed, “I don’t think District 007 is going to be what you think it will be.”  She was right.  It far surpassed anything I could have ever imagined in terms of special education in America.

Alas, even in the best environments, there will always be a bad apple.  Miss Lydia is Grace’s bad apple.  She is one of the paras in Grace’s classroom.  She’s been in special education for years.  She’s been through a lot, too.  A few years ago, a student hit her so hard that he fractured her neck.  Working with this population is a calling.  It’s not a job.  I think that Miss Lydia might need to retire.  I think that she’s put in her time and needs to go out on a high, but she continues to show up even though she may be burned out.

Miss Lydia does not understand mental illness.  She might think that she does.  Grace is in the EBD classroom–the emotional and behavioral classroom.  She was put with the more “emotional” kids rather than the “behavioral” ones.  Grace doesn’t have behavioral problems.  She simply can’t function in a typical classroom setting.  The least restrictive environment for Grace is this setting.  She would not be able to change classrooms, follow instructions, hear above the din of thirty kids, or even do homework.  She needs a lot of help to accomplish small things.  Miss Lydia often accuses Grace of being difficult or crying in class because she doesn’t feel like doing her work.  When Grace has her debilitating migraines at school, Miss Lydia often accuses Grace of making them up to get out of doing something she doesn’t like.  When Grace experiences visual aura associated with her migraines like seeing lights, Miss Lydia often says that she’s lying.

Miss Lydia is a problem.

I simply tell Grace’s teacher what Miss Lydia is doing.  Miss Lydia is smart in that she doesn’t openly accuse Grace of these things.  She volunteers to take Grace to the nurse’s office, and then she accuses Grace while she’s alone with her.  It’s very sneaky.

The good part about this is that the school social worker, the head of Grace’s program, and her teacher believe Grace.  They have disciplined Miss Lydia for her antics.  Miss Lydia is now not very fond of Grace because she advocated for herself.  So, Grace now comes home daily and says upon entering the house, “Ugh, Miss Lydia did this today!” What Grace doesn’t understand, however, is that she’s getting practice in dealing with difficult people who don’t understand her particular health condition.  Schizoaffective disorder is a disease.  It’s a chronic, lifelong disease.  It’s not Grace’s fault that Miss Lydia is burned out and ignorant, but Grace does have to learn to know that she’s not crazy.

There’s a name for what Miss Lydia is doing.  It’s called ‘gaslighting’.  Some therapists will call it ‘crazymaking’.  She is trying to manipulate Grace’s sense of reality or perception in an effort to manipulate her.  Why? I don’t know.  What I do know is that gaslighting is scraping the bottom of the barrel when it comes to human behavior, and it’s rampant.  Telling a vulnerable person who is in pain that maybe they’re making it up because they really have a problem is manipulative.  It’s based on this manipulation: “I don’t see a problem.  In fact, there wasn’t a problem here until you pointed it out so maybe you’re the problem.”  The issue with these sorts of interactions is that we don’t easily recognize them unless we’ve had practice with them, and we also must have a good sense of self to stand up to them.  Miss Lydia might be trouble, but she’s actually giving Grace much needed practice in self-actualization and self-advocacy.  Oddly enough, this is the benefit of dealing with someone like Miss Lydia provided that there is adequate support in the environment.

As a parent, part of me wants to rescue Grace from Miss Lydia, but I know that Grace is getting something from Miss Lydia that I’ll never be able to give her–a strong sense of empowerment.  She’s learning to stand up for herself not in spite of her illness, but with her illness.  She’s also learning that no matter how amazing and supportive an environment might be, there will probably always be someone in that environment who just doesn’t get it.  That’s true everywhere.  So, we learn to ask for help from those who care about us, practice self-advocacy, and implement those healthy boundaries–the ones everyone’s been talking about in those support groups.

It’s not easy to let our kids out there, is it?

Marlin: I promised I’d never let anything happen to him.
Dory: Hmm. That’s a funny thing to promise.
Marlin: What?
Dory: Well, you can’t never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

“Finding Nemo”


8 thoughts on “Just Keep Swimming

  1. First, I lurv Finding Nemo and this exchange between Marlin and Dory in particular. It speaks volumes, doesn’t it?

    Second, good for Grace! It’s not easy for neurotypical people to stand firm in what is true when faced with ‘crazy making’ and gaslightling. I can’t imagine how much more difficult it must be for someone with health issues such as schizoaffective disorder. What Grace is learning will be invaluable as she walks through life. While I too would prefer she not have to encounter the toxic care of Miss Lydia, knowing others have her back makes me feel better. What a difference a little over a year makes, right?

  2. Learning to handle this type of behavior, we shouldn’t have to ever. Learning it at a young age, terrible. It is wonderful other adults are supporting her, but my question is, why is this person still there?

  3. This reminds me of the post of that girl in…Caribou(?) who you were watching, who declared that she wanted to work with children who had special needs – she’ll be a Miss Lydia.

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