When I left our story in its last installment, Sarah had made it through the first marking period of fifth grade, and the short summary is that things weren't going super-smoothly, and Chris and I started to look beyond the boundaries of the school building for some suggestions on how to make things better.
We took kind of a multi-faceted approach - so rather than trying to deal with this in chronological order, I'll walk through the different types of efforts we were making. (It's also hard to get this right chronologically because it's basically a big mental blur for me.)
Most of our concerns at the time were academic. We did notice behavioral issues with Sarah - ranging from anger to depression to disorientation - but our focus was on helping her be more successful in school.
At the time, we figured that if we could get that part on a more even keel, the rest of the day would also improve. This has certainly proven true - though not at all in the way we expected!
Pediatrician, psychologist, psychiatrist
To help see if we could get things sorted out, first, we headed back to the pediatrician. "We don't think that ADHD is the only thing going on," was our main contention. We talked about Sarah's growing depression - her sometimes uncontrollable fits of anger, screaming and crying - and her inability to do what seemed like "simple" things, like answer verbal questions without delay.
And we talked about how her grades seemed to go all over the place - without what seemed like any rhyme or reason. That's when the concept of learning disabilities first came up - though the pediatrician, as nice as he is, was quick to say he wasn't an expert on those.
We started having Sarah see a psychologist - a great guy who loves God and loves helping kids, with a soothing voice and an incredibly calm demeanor - and while it didn't immediately lead to any breakthroughs, it did lead us into the "path" of having Sarah seen and evaluated by a psychiatrist.
The first time that word came up in conversation, Sarah, who had been tracing a line in the carpet with her foot almost obsessively, stopped cold. She's not dumb - and she heard that and immediately went into "Oh, they think I'm crazy!" mode.
It was pretty bad.
Eventually - and it took some real effort - Sarah made it through the psychiatrist's evaluation.
Not being familiar with him, she was incredibly reluctant - and cried through many of the questions. As Chris and I sat with the psychiatrist afterward, he asked us:
"How familiar are you with the autism spectrum?"
We didn't know it then - in fact, I remember going through the conversation and thinking, "Well, that's about what I expected" - but our lives were all going to change.
And, at least at first, it wouldn't be for the better.
We talked more, and the psychiatrist explained to us some details about Asperger's and PDD-NOS. He couldn't be 100% sure which Sarah fell into, but he was thinking Asperger's - and he recommended she undergo more rigorous testing through the practice's "Spectrum Clinic," which was designed to deal more thoroughly with the differentiations between autism, Asperger's and PDD-NOS.
(If you're wondering? PDD-NOS is "pervasive developmental disorder, not otherwise specified," and in my opinion, it's probably one of the worst medical phrases ever. But we'll get to that later.)
The therapy coincidence
I've always done some freelance website design as a side gig, and as it happened, right around the start of Sarah's fifth-grade year, I took on some work for a new local child-therapy center, where a group consisting of an occupational therapist, speech-language pathologist, social worker, etc., teamed up to provide services for all sorts of kids, mostly on the autism spectrum.
During one of my earliest visits, I spoke with a wonderful speech-language pathologist about setting up the company's website. To help me understand what their needs were, I asked her to describe to me what types of needs their clients had.
And I paled - because she was describing Sarah. Sensory issues. Trouble with "motor planning." Trouble reading or comprehending written instructions in certain cases. Inability to follow complicated directions.
Chronologically, this was BEFORE we received an autism-spectrum diagnosis, but I just knew.
As we talked, we happened onto a barter-system concept; I'd do some work for them in exchange for some speech-therapy sessions to help figure out Sarah's reading-comprehension and test-taking issues. As I said, at this point, our biggest concern was helping Sarah academically, so it seemed to be the perfect answer!
Anyway, as part of the center's multi-faceted approach, they also arranged for Sarah to be evaluated by the occupational therapist.
That evaluation was probably the most time that any of the medical or educational professionals we've worked with has spent, talking with both us as Sarah's parents, and with her directly.
We talked about everything from her ability to sleep for 12 hours straight as an infant to her dislike of hats - or, really, anything on her head except a hoodie - and her tendency to be one of the smallest and least-developed kids in her class.
That's when the occupational therapist said:
How familiar are you with sensory processing disorder?
This one was sort of new to me. The therapist patiently explained how our senses work - not just our five commonly known ones, but others, like our proprioceptive sense that helps our mind know where "we" are in space, and our vestibular sense, which governs movement and equilibrium.
We also talked about the interoceptive sense, which describes how your body regulates itself.
One bloggy friend, Judy, had asked me if I thought Sarah's overall size and physical development were related to her diagnoses, and I said my take is that Sarah's system just works more slowly than others'. She is slow to realize she's hot or cold, slow to realize she's hungry or thirsty, and so on. That's interoception, or a lack of it. It's like your body doesn't pick up on its own signals, and it's hard to cope with!
While the therapist described all this, she also explained motor planning and executive functioning - skills your brain and mine probably perform automatically to do things like walk up a set of stairs and grab the right items before leaving the house daily. In Sarah's case, every day, she has to think about these things in the way you'd think about solving a Rubik's cube.
There's a great checklist here that really helped this "diagnosis" hit home for me. We were not thrilled to keep building up the alphabet soup surrounding Sarah - at this point, the psychologist had tentatively suggested OCD might also be an issue, so we were up to ADHD, OCD, Asperger's and now SPD at this point - but this one fit in a way that really explained a lot for Chris and me.
Essentially, if you imagine a thermometer, Sarah's always hovering just under boiling. Every noise, every smell, every lighting change, gets her sensory system "heated," and it doesn't take much to go from that day-to-day level of heated to, unfortunately, "boiled over."
And boiled over is where meltdowns happen. To the uninformed, Sarah's meltdowns look like temper tantrums from a really big kid who should "know better." To those having them, they feel like a million tiny needles pricking your skin while a shrieking whistle screams in the background while lights flash all around you. (I definitely encourage you to read more about the meltdowns - from an adult who's experienced them - here.)
In light of all of this, the recommendation was to begin occupational therapy in addition to the speech therapy sessions, and of course, since it sounded like such a great way to help Sarah "adjust" to some of the pressures, especially those that would be ahead in middle school, of course Chris and I were on board.
To quote a silly phrase, "Everything did NOT run... according to plan."
Sarah HATED the occupational therapy sessions. She didn't love speech therapy, either, and it was especially bad when we added in a social worker to the mix and ended up with four days a week of sessions after school. She hated going to the therapy center at all, truth be told. She cried, had screaming fits with the staff, she had screaming fits with Chris and I.
There were a lot of reasons - and maybe no reasons at all, if that makes sense. The simplest one was that Sarah was just different enough to need help and not different enough to want it - or to accept it without question.
We'll come back to this later - in the part where I talk about guilt, my own meltdowns and making tough choices - but for now, let me jump back over to what was going on at this time at home and at school.
Dover Dragons, have really been the epitome of patience and understanding. In August 2011, Sarah earned her orange belt - after what turned into a gruelingly long effort. She did it, though, and she was so proud!
School and home
At the recommendation of the counselor, we quickly met with the administrators in the elementary school and set up a 504 plan - kind of an "unofficial official" agreement of accommodations the district would make, such as having Sarah not take timed tests.
We also arranged for Sarah to have her vision tested again, and she started wearing glasses, which proved incredibly helpful. For Sarah, even having slight trouble seeing was just exacerbating every other problem, so this was key to us getting through fifth grade!
We did manage to make it the rest of the way through fifth grade. Homework was a train wreck - but the teacher, who as I said was incredibly kind, as well as pretty experienced, would absolutely just accept a note from us in the agenda to the effect of "Bad night, no shot."
The worst part of this school year was that it was Sarah's first major experience being bullied.
Some of the kids on her bus started calling her gay (in sometimes less-nice ways). I'm not sure that at first, Sarah even knew what some of the taunts meant, but she eventually handled it incredibly well - by filling out a "guidance slip" and turning it in at the principal's office.
Unfortunately, when you're "different" already, being the girl with short hair, bermuda shorts and a penchant for the color blue and Matchbox cars, well, it's kind of a recipe for disaster. We talked openly with Sarah about whether she'd want to let her hair grow out - but she adamantly doesn't. (As for the shorts, we don't allow anything shorter than mid-thigh, and with legs as long as Sarah's, that rules out most non-bermudas!)
This is an area that tears me in two - I want Sarah to be herself, and I want her not to get picked on, and when those two things seem mutually exclusive, I'm just not sure what to do.
Onward to middle school
Once again, we weren't sure Sarah would pass the school year, but she did - in part because our district seems really big on social promotion, sadly.
By this time, we had an "official" diagnosis of Asperger's, so over the summer, we contacted the middle school and made arrangements to start the IEP process.
Things started out as well as you could expect - we loved the team, and they were willing to do all sorts of things, from walking through the school building with us and with Sarah before the year began, to getting her schedule to us early, to placing her in a co-taught math class with a learning support teacher as well as another teacher to ensure she was getting the right amount of attention.
We tried hard - all of us did. I started coming home from work at 4 p.m. every day, and we broke every assigned project into parts and made a list of what to work on each night.
Within the first two weeks, we had projects in every major subject, plus a novel to read (which meant reading it TO Sarah, in our case.)
We were spending 2 to 3 hours on a good night on homework - and trying to get Sarah to sleep no later than 9 p.m.
The stuff we worked on at home turned out fairly well - but in-class projects were a disaster, as was the school day as a whole.
Sarah would take the wrong binder to class, forget the textbook, go to the wrong room, lose her locker combination, not get dressed for gym quickly enough, not eat lunch fast enough, cry when she was called on unexpectedly - and the list goes on.
We continued with the IEP process - which culminated in a substitute district psychologist doing her own evaluation of Sarah because the district would not accept our private psychiatrist's evaluation, though they would "consider" it.
Sarah had never met this woman before, and cried through most of the evaluation. We didn't know when it was coming - so we hadn't prepared her for it. She was pulled out of class to be tested - and then cried because she was confused when she returned.
Then, when the IEP meeting rolled around, the regular district psychologist was back from maternity leave, and she helped guide the decisions - even though she'd never had a conversation with Sarah.
The IEP meeting was a middling success. Chris and I had seen the district's findings before we went in, and we didn't agree with many, but others were spot-on.
These tests claimed that Sarah's IQ was "Low Average" - 89. Her subtests were all over the mark - from Average to Low Average to Borderline to Extremely Low. She didn't test as "Above Average" in any area - not even ones she was great at in her classes - though an informal test of her oral reading ability put her at 146 words correct per minute, when state benchmarks suggest sixth-graders should be at 117 to 145.
The all-over-the-board part didn't surprise me, but "Low Average" did.
My contention - based on my experience as a gifted student - was and remains that Sarah is gifted and learning disabled, also known as "twice exceptional."
The district, however, felt otherwise.
The most interesting part was that this test, too, showed evidence of a learning disability related to language processing. However, in the report comments, Sarah's teacher said she did not display in class the same level of difficulty as she did on the test.
To be considered "learning disabled" in Pennsylvania, a student most demonstrate a severe discrepancy between their cognitive ability and achievement on testing, and must demonstrate a need for specially designed instruction. Because Sarah was passing her classes, she did not demonstrate a need for specially designed instruction, and here's the scary part:
Because her IQ test score was so low, the rest of her scores were "in keeping" with it, meaning she was not demonstrating a severe discrepancy between ability and achievement.
Essentially, this report said, "Look, folks, you've got a C/D student pulling Ds. That's not a learning disability."
I didn't agree, and I went into the meeting with every good intention of making myself clear and NOT SIGNING ANYTHING. Ask Chris - I must have told him 10 times, "Don't sign anything if we're not sure about it!!"
I wish I could say that I stuck to my guns - or I wish I could say that the district bullied me into signing. Neither is true. Honestly, they were so nice and so pleasant with us that it seemed unwise to rock the boat, so we accepted their recommendations, which did include IEP accommodations under the category of "Other Health Impairment" consistent with PDD-NOS, but with no record of a learning disability.
Once again, we were left with phrases that basically said, "There's probably something 'wrong,' but we don't really have a name for it." Boy, I hate that. I hate feeling powerless, and I hate knowing that even the doctors can only at best dump Sarah into a bucket that doesn't begin to describe the awesome and unique person she is.
At school, in short, not much changed. Most of Sarah's teachers were already making accommodations for her on tests; she was in math remediation at the end of the day (in addition to the co-taught class), and we did most of her projects at home, because Sarah just couldn't or wouldn't work on them independently when given time in class.
In some classes, Sarah was doing well. Geography - which also featured her favorite teacher - was especially good. Sarah really got into those projects, too!
On the other hand, some classes were NOT going well. Chris got a call at work one day with the following story:
The teacher had given a writing assignment - do the first paragraph of something, and then bring it to the teacher for approval and direction on how to continue.
Sarah wrote two pages longhand in her notebook. As the teacher walked past, she said, "Oh, that isn't right - you are just supposed to do the first paragraph." Then she walked away and left Sarah to continue.
Sarah erased the entire two pages - which she'd later need - and rewrote one paragraph.
The teacher claimed she was being defiant - and she was upset that Sarah never turned in the full essay later. (She turned in that paragraph, thinking that was the entire assignment and that she'd misunderstood.)
I was upset that she didn't take the time to say, "Sarah, that's great - save that for later. But can you also copy your first paragraph onto another piece of paper for me?"
Sarah is literal. If you tell her something isn't right, she's going to erase it. It's that simple, and if you know how to work around it, you can get what you need.
At home, I was able to explain everything and get Sarah to dictate to me the entirety of her thoughts, which were more than A-quality.
This led to a really awful situation in which the teacher accused me of doing Sarah's work for her, because the work Sarah turned in when I helped her understand the assignment was of "higher quality" than what she did in class.
At first, I was royally angry. Among other things, with 13 years as a professional writer and journalist, don't you think I could pull more than a 72% in a sixth-grade class if I were doing that?
When I calmed down, though, I really understood. No one who has a room full of 30 students can possibly take the time to be what Sarah needs in order to "get" quality work out of her. But a teacher with a lot of experience - and who really wants to challenge her students to be their best - could easily think that if a student couldn't follow one simple instruction in class, how on earth could they REALLY be producing top-quality work at home?
On top of all of this, Sarah was having meltdowns daily in her math remediation class. She would cry - and yell at the teacher. She hated being labeled as what she perceived as "dumb" - in fact, her math grades were among her highest, oddly, yet she couldn't get taken out of the remedial program.
That's when we hit rock bottom.
Sarah was physically pale and getting sick to her stomach every day before math - and, since it was her last two periods of the day, she was coming home completely wasted away.
Her other subjects were slipping, too - although her favorite classes, geography and science, were first thing in the morning, she spent them worrying about what would come later in the day.
She got hit by a ball in gym class, and the teacher laughed - he said kids with glasses were a magnet for balls. (I think he was trying to make HER laugh, but it definitely didn't work.)
She hated everything and everyone.
The part where Mom and Dad have meltdowns
This is where guilt sets in.
I have spent way too much of the past few years wishing, deep down inside, that Sarah was "more like everyone else."
I never wanted that for any children I might have - and I never really wanted it for myself as a child, even when I thought I did!
But here I was, looking around at the crisis our life was becoming, with tears almost every night (not just from Sarah), with Chris and I both under stress at work, and all I could think of was, "Why is she like this?"
It hurts to admit, and it hurts to think that I probably said those words TO Sarah when I was melting down myself. (I can't be sure - but I'm positive I've said things equally as hurtful.)
It hurts to admit that I would see young family friends of ours, students from our tae kwon do school or 4-H or our neighborhood who were doing things like getting black belts and making the honor roll and spending every weekend with friends, and I'd think I'll never have that. Sarah will never have that.
It hurts to admit that I was GLAD the first time Chris really lost it after one of Sarah's meltdowns - because I finally wasn't alone.
It hurts to admit that when I left my full-time job of 13 years so that I could be home with Sarah more - even though God opened doors that brought me to a combination of jobs I truly love and that are a financial benefit to our family - I was too angry at "having" to do it to see it for the blessing that it has been.
It hurts to admit that I looked at some friends who have children with incredibly profound disabilities - and was jealous of the help and understanding they get, and of their own children's inability to realize their differences.
And it hurts more than anything to admit that I ran screaming and crying up the stairs one day after realizing that Sarah was sitting in our hallway, hitting her head as hard as she could against the wall while the two of us were home alone. We were both of us sobbing, her saying, "I hate this, I hate my head, I hate what's inside it" and me saying, "You can't DO that, they'll take you away and make you live somewhere else, they'll think you're crazy!"
The rational part of me understands grief - and that it can make anyone do things they're not particularly proud of. That same part of me understands that even if Sarah doesn't always realize it, sometimes she's grieving too.
Is this the life any of us would have chosen? I don't know.
But the further I come from those darkest days, the more I realize that there's no perfect life, no perfect kid - and I'm not sure I'd trade this for any other set of problems. Nothing's better or worse - they're all just different problems.
What we decided
I wish we could say we had some shining "aha moment." Instead, we had a bunch of bombs about to go off, and we just defused each one and tried to move on to the next.
We quit all the therapy sessions - abruptly, and against the therapists' recommendation. I believe that occupational therapy in particular, and also speech-language help, could have been good for Sarah - if we'd started them earlier. I believe that they could have worked now, if Sarah wanted the help and trusted the people helping her. I'm glad we did get an SPD diagnosis, because I believe it has changed a lot about how I understand Sarah and how I help her face the day.
But more than all that, I believe in listening to my child. I believe that if she is miserable to the point of depression and self-harm (the head-against-the-wall thing, as well as picking her nails to the point she has ripped them off) at the thought of doing something, then we should find a way not to do it. So I called one day, cancelled all remaining sessions, and said we were flat-out done.
I have been criticized for that - by therapists and other "professionals." I'm told I'm sending a bad message - that quitting is OK, that acting out gets you what you want, that you don't have to stick to things if they're hard.
I prefer to think that I'm keeping my promise to my child, to love her and respect her and value her input. (Carma put this INCREDIBLY well in this post on Christian Unschooling called "Giving in to My Kids," and there is a beautiful and wonderful take on it as well on Positive Parenting Connection titled "If I Am Kind to My Child.")
When school got bad, we'd occasionally keep Sarah home "sick" - sometimes to see her counselor, but other times just to de-stress. The principal was in the loop, and it seemed to help at first.
As we hit a breaking point in February 2012, we kept Sarah out for three days in a row. She was almost unable to leave the house, she was so stressed, and more than three days' absence requires a doctor's note and diagnosis, so we knew we had to figure something out - fast.
On the first of those three days, Chris and I sat down and talked - and we realized none of us could keep going this way. We'd already been talking about homeschooling for seventh grade, and were pretty close to making a "yes" decision on it.
God had a different plan. On that first day "out," I spent hours researching and printed out the affidavit and objectives we'd need in order to start homeschooling right then.
Because of Sarah's IEP, Pennsylvania law requires that a licensed clinical psychologist or special-education teacher must "pre-certify" her objectives. I worked the phones for hours - reaching out to Sarah's counselor (who was just back from medical leave and who didn't love the idea of a sudden change in plan for Sarah) as well as every special-education teacher and homeschooler I knew.
We got the call Feb. 29 that the counselor had signed the objectives. We rushed to pick them up, and then filed our paperwork that day with the district. We were skating on the edge of our borrowed time - another day and we'd be in the "unexcused absence" camp, and given that we weren't exactly without absences already, we were legitimately worried about truancy.
Our first "homeschooling day" was that one. We just couldn't send Sarah to a place where she was so miserable - and learning so little - any more.
We don't hate our school district - or any of the professionals who tried to help us. We don't think their ways are "bad" - and we appreciate the help we received.
But we love our daughter, and yes, we humbly believe we can do better by her.
Shortly thereafter, we stopped having Sarah take the medications she'd been on for ADHD and depression. They had served a purpose - but our goal now has been to radically simplify.
In some ways, our world has gotten a lot smaller - we've closed our circle, we've brought Sarah home, we've stopped doing an awful lot of things, we're quiet an awful lot of the time.
In more ways, though, our world has gotten bigger. I spend my days with my daughter. Our whole family goes out and enjoys the world around us. We learn a lot - and we're all learning more about each other and how to listen and love.
And we smile bigger. Oh, do we smile.