As we start to settle in just slightly to our new “this is what learning is to us now” rhythm, I’ve been thinking a LOT lately about my own educational experiences. In some ways, I’m very different than Ashar – and that can be hard – but in a lot of ways, the more I think about it, the more I realize that if our personalities are different, well, our educational experiences have an awful lot in common! This is the long-overdue third part of the trilogy; if you haven’t already, before reading today’s post, please read this post to learn about MY educational background and how it influenced me, and even more importantly, please read this post about Ashar’s life through the beginning of fifth grade. They’re long, but I promise to break up the story with cute pictures and, hopefully, a better understanding of how we’ve found ourselves where we are!
When I left our story in its last installment, Ashar 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 Ashar – ranging from anger to depression to disorientation – but our focus was on helping him 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!
Ashar really did like his fifth-grade teacher. This is the whole class at the local SPCA in December 2010; the teacher, an animal lover just like Ashar, helps her class each year collect money and items around Christmas for the shelter. That was probably the high point of Ashar’s year, going to drop everything off!
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 Ashar’s growing depression – his sometimes uncontrollable fits of anger, screaming and crying – and his inability to do what seemed like “simple” things, like answer verbal questions without delay.
And we talked about how his 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 was, was quick to say he wasn’t an expert on those.
We started having Ashar see a psychologist – a great guy who 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 Ashar seen and evaluated by a psychiatrist.
The first time that word came up in conversation, Ashar, who had been tracing a line in the carpet with his foot almost obsessively, stopped cold. He’s not dumb – and he heard that and immediately went into “Oh, they think I’m crazy!” mode.
It was pretty bad.
Eventually – and it took some real effort – Ashar made it through the psychiatrist’s evaluation.
Not being familiar with him, Ash 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 Ashar fell into, but he was thinking Asperger’s – and he recommended Ash 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.)
In good news, Ashar’s 4-H wildlife scrapbook (and a container garden of his) won first place in our state Farm Show in January 2011. But even with that good news, Ashar was still only able to manage a kind-of smile. (The noise and crowds at the Farm Show might have contributed to that, as we were to later learn.)
The therapy coincidence
I’ve always done some freelance website design as a side gig, and as it happened, right around the start of Ashar’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 Ash. 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 Ashar’s reading-comprehension and test-taking issues. As I said, at this point, our biggest concern was helping Ashar academically, so it seemed to be the perfect answer!
Part of what was confusing us at the time was that Ashar at home was a different person – relaxed, mostly happy, smiling, loving, able to enjoy things like his new “Lucky Ladybug,” one of his 11th birthday presents. But Ashar at school, or Ashar TALKING about school or doing homework, was not!
Anyway, as part of the center’s multi-faceted approach, they also arranged for Ashar 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 Ashar’s parents, and with him directly.
We talked about everything from his ability to sleep for 12 hours straight as an infant to his dislike of hats – or, really, anything on his head except a hoodie – and his tendency to be one of the smallest and least-developed kids in his 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 Ashar’s overall size and physical development were related to his diagnoses, and I said my take is that Ashar’s system just works more slowly than others’. He is slow to realize he’s hot or cold, slow to realize he’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 Ashar’s case, every day, he 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 Ashar – at this point, the psychologist had tentatively suggested OCD might also be an issue, so we were up to ADHD, OCD, Asperger’s or PDD-NOS 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, Ashar’s always hovering just under boiling. Every noise, every smell, every lighting change, gets his 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, Ashar’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 Ashar “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.”
Ashar HATED the occupational therapy sessions. He 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. He hated going to the therapy center at all, truth be told. He cried, had screaming fits with the staff, he 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 Ashar 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.
It’s hard for Ashar to attend tae kwon do classes regularly, in part because it means changing clothes, stopping what he’s doing to go somewhere else, walking around barefoot, touching things, yelling (and hearing other people yell)… but he stuck with it, attending at least occasionally, and our instructors, Mr. Bob and Mrs. Tracy Kistner at Dover Dragons, have really been the epitome of patience and understanding. In August 2011, Ashar earned his orange belt – after what turned into a gruelingly long effort. He did it, though, and he 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 Ashar not take timed tests.
We also arranged for Ashar to have his vision tested again, and he started wearing glasses, which proved incredibly helpful. For Ashar, even having slight trouble seeing was just exacerbating every other problem, so this was key to us getting through fifth grade!
Ashar was star student of the week once during fifth grade – and got to fill out a chart with things he liked! Notice that at the time, math is one of his favorite subjects but he “doesn’t know (frown)” what she likes about it? That’s classic Ashar. Favorite is just a “thing” he doesn’t exactly get. (Favorite food? “I have a lot!” Favorite book? “All kinds!”)
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 Ashar’s first major experience being bullied.
Some of the kids on his bus started calling him gay (in sometimes less-nice ways). I’m not sure that at first, Ashar even knew what some of the taunts meant, but he eventually handled it incredibly well – by filling out a “guidance slip” and turning it in at the principal’s office.
Onward to middle school
Once again, we weren’t sure Ashar would pass the school year, but he 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 Ashar before the year began, to getting his schedule to us early, to placing him 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.
The first day of sixth grade even started with a smile – despite us having to get up at what I consider an almost sinful hour, 6 a.m., to start getting ready!
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 Ashar, in our case.)
We were spending 2 to 3 hours on a good night on homework – and trying to get Ashar 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.
Ashar would take the wrong binder to class, forget the textbook, go to the wrong room, lose his locker combination, not get dressed for gym quickly enough, not eat lunch fast enough, cry when he was called on unexpectedly – and the list goes on.
We did things like have him make collages for his (incredibly large) required binders, so that he’d have more memory of which one went with which subject (and hopefully would have something pleasant to look at during class, which sometimes could help calm him down).
We continued with the IEP process – which culminated in a substitute district psychologist doing her own evaluation of Ashar because the district would not accept our private psychiatrist’s evaluation, though they would “consider” it.
Ashar 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 him for it. He was pulled out of class to be tested – and then cried because he 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 Ashar.
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 Ashar’s IQ was “Low Average” – 89. His subtests were all over the mark – from Average to Low Average to Borderline to Extremely Low. He didn’t test as “Above Average” in any area – not even ones he was great at in his classes – though an informal test of his oral reading ability put him 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 Ashar 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, Ashar’s teacher said he did not display in class the same level of difficulty as he 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 Ashar was passing his classes, he did not demonstrate a need for specially designed instruction, and here’s the scary part:
Because his IQ test score was so low, the rest of his scores were “in keeping” with it, meaning he 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 Ashar into a bucket that doesn’t begin to describe the awesome and unique person he is.
At school, in short, not much changed. Most of Ashar’s teachers were already making accommodations for him on tests; he was in math remediation at the end of the day (in addition to the co-taught class), and we did most of his projects at home, because Ashar just couldn’t or wouldn’t work on them independently when given time in class.
In some classes, Ashar was doing well. Geography – which also featured his favorite teacher – was especially good. Ashar really got into those projects, too!
Ashar got a perfect score on his project about Wyoming. My only contribution was to draw the black rectangle outline of the state and the timeline “ruler” in Sharpie, and to type what Ashar dictated for the timeline dates. He did everything else – but it took us probably six nights of an hour a night to get this done. One night, we’d do ONE timeline entry and print a title. The next, we’d draw ONE geographic feature and do ONE timeline entry. It was slow going, but the end result was great!
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.
Ashar wrote two pages longhand in his 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 Ashar to continue.
Ashar erased the entire two pages – which he’d later need – and rewrote one paragraph.
The teacher claimed he was being defiant – and she was upset that Ashar never turned in the full essay later. (He turned in that paragraph, thinking that was the entire assignment and that he’d misunderstood.)
I was upset that she didn’t take the time to say, “Ashar, that’s great – save that for later. But can you also copy your first paragraph onto another piece of paper for me?”
Ashar is literal. If you tell him something isn’t right, he’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 Ashar to dictate to me the entirety of his thoughts, which were more than A-quality.
This led to a really awful situation in which the teacher accused me of doing Ashar’s work for him, because the work Ashar turned in when I helped him understand the assignment was of “higher quality” than what he 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 Ashar needs in order to “get” quality work out of him. 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, Ashar was having meltdowns daily in his math remediation class. He would cry – and yell at the teacher. He hated being labeled as what he perceived as “dumb” – in fact, his math grades were among his highest, oddly, yet he couldn’t get taken out of the remedial program.
That’s when we hit rock bottom.
Ashar was physically pale and getting sick to his stomach every day before math – and, since it was his last two periods of the day, he was coming home completely wasted away.
His other subjects were slipping, too – although his favorite classes, geography and science, were first thing in the morning, he spent them worrying about what would come later in the day.
He 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 Ash laugh, but it definitely didn’t work.)
He 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 Ashar 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 Ashar), with Chris and I both under stress at work, and all I could think of was, “Why is he like this?”
That hurts.Â
It hurts to admit, and it hurts to think that I probably said those words TO Ashar 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. Ashar will never have that.
It hurts to admit that I was GLAD the first time Chris really lost it after one of Ashar’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 Ashar more – even though doors were opened 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 opportunity that it was.
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 Ashar was sitting in our hallway, hitting his head as hard as he could against the wall while the two of us were home alone. We were both of us sobbing, him 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 Ashar doesn’t always realize it, sometimes he’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 Ashar – if we’d started them earlier. I believe that they could have worked now, if Ashar wanted the help and trusted the people helping him. I’m glad we did get an SPD diagnosis, because I believe it has changed a lot about how I understand Ashar and how I help him face the day.
But more than all that, I believe in listening to my child. I believe that if he is miserable to the point of depression and self-harm (the head-against-the-wall thing, as well as picking his nails to the point he 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 him and respect him and value his input. (There is a beautiful and wonderful take on this on Positive Parenting Connection titled “If I Am Kind to My Child.”)
When school got bad, we’d occasionally keep Ashar home “sick” – sometimes to see his 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 Ashar out for three days in a row. He was almost unable to leave the house, he 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.
Suddenly we 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 Ashar’s IEP, Pennsylvania law requires that a licensed clinical psychologist or special-education teacher must “pre-certify” his objectives. I worked the phones for hours – reaching out to Ashar’s counselor (who was just back from medical leave and who didn’t love the idea of a sudden change in plan for Ash) 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 Ashar to a place where he 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 son, and yes, we humbly believe we can do better by him.
Shortly thereafter, we stopped having Ashar take the medications he’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 Ashar 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 son. 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.
Oh Joan, it must have been truly difficult to write the whole remainder of the story out! I was feeling the emotions along with you as I read it. What a painful experience for you all! Isn’t it hard to look back on what you went through and think “if I had only realized then what I know now?”…I know I do that, and our situation with our girls wasn’t as complicated as yours was with Sarah. I am so glad for you that you have found such a good ending to that struggle, and a new beginning for what’s to come next 🙂 I hope the smiles FAR outnumber any bad days from this point on!!
Susan, THANK YOU so much – for reading it all, for your kind words, and mostly for just “getting” what I’m trying so hard to share, that it’s been a long road!
You are 100% correct – our smiles far outweigh our bad days now, and in the end, that makes it worth all the struggle (though the hindsight thing really hurts when I think too hard…)
Anyway, just thank you, more than I can say. It really means a lot to be able to call you a kindred spirit!!
Joan, I am glad that my words can help 🙂 I am always so happy when I find people in the blogging world to connect with, and I have been enjoying getting to know you and your family for the past few months.
Yeah, hindsight can be so tough…
Joan, I am so sorry to read this. It must have been hard to write and harder to live through. I am so glad that you and your daughter get to smile bigger now!
Theresa, we’re glad for that too!! And I appreciate the support more than I can say. Thank you so much!
This whole story was very interesting; I just read all 3 entries. It makes me think about my own experiences in school, which are probably pretty similar to yours.
Ms. Snyder was criminally under-appreciated, both by the school district and by the students (or at least me). Just getting us out of class to go someplace else where we weren’t constantly bored was probably a plus. I’m lucky that I’m kind of a low key personality, so I wouldn’t cause much trouble in class. I was just constantly bored. But I probably learned more just talking to her and the rest of the seminar kids than I did in weeks in class. She was definitely the most influential teacher I’ve had.
I’m glad your daughter is doing better with homeschooling. The whole one-size-fits-all situation in public school doesn’t work for everyone and I applaud anyone who’s able to get their children out of that. And it seems like schools are moving towards more centralized control (although I don’t really know; I don’t have any children). That probably ties in to Ms. Snyder’s under-appreciation. I imagine it was hard to produce quantifiable results for seminar, but it was totally worthwhile for the kids in the class even though it was hard to prove.
Anyway, this whole story was fascinating, and thanks for sharing. Maybe your kid should play saxophone and listen to jazz. That helps everyone. And by everyone, I mean me.
Well, hi! I appreciate the comments – and I sure hope Cindy is reading and appreciates them too (she does pop in sometimes.)
I think we’re all guilty of the criminal under-appreciation; I sincerely credit her and George Bradshaw with keeping me from dropping out, because I’m sure I would have without sax and seminar.
I think you’re right, too, about centralized control of schools; I guess I can see the benefits in some ways – for instance, my husband moved around a lot as a kid and his education was wildly all over the place, so I get why wanting to be consistent from school to school and even state to state is a goal.
But then you think, “OK, but these are PEOPLE,” and I start to wonder WHY it’s a goal.
Anyway, I appreciate you stopping by – and am so glad you commented. Hope all’s well with you – and I do keep trying to get Sarah to take up the saxophone, though she’s angling for percussion (what did I do to deserve that?)
This is an absolutely fantastic article! I know I’m going to find myself quoting you to anyone who will listen! There are so many points I’d like to comment on, so I’ll likely stop by your blog again later. For now, though, this statement is so thought-provoking:
–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.”–
I’ve never heard the term “twice exceptional” before, but what an awesome term–I HAVE a child like that!!! And thanks to the flexibility of homeschooling and personalized learning, he is doing well; I have no doubt that the story would be completely different if he were attending school, whether public or private.
And as for my little girl who is experiencing so many motor skill delays, she also has many little symptoms that hint at SPD. So far, though, I’m hopeful that she is just developing on a slightly different timetable than the others. She has begun taking steps, which is a huge accomplishment for her (she’s 16 months).
I so appreciate the time and effort you put into this post!
Judy, I’m so glad you stopped by!! You always make me smile.
We are blessed to know a wonderful woman, my former gifted seminar teacher actually, who introduced me to that term. I love it – it hits exactly the right balance for me, because I hate the idea of “learning disability,” which sounds so cold (and makes it sound like Sarah doesn’t excel), and “gifted,” which seems to imply that she doesn’t struggle, which of course you know she does as well!
Homeschooling is EXACTLY the right fit for us. For some people, I realize it’s not, but I think you nailed it – the flexibility and personalized learning aren’t just a “bonus,” they’re a must!
I keep your whole family in my prayers, especially your sweet little girl. I know that no matter what her special abilities will be in any area, you will love her and help her grow into the BEST person! 🙂
Oh my goodness, Joan. What a story! So many things to discuss here. A classroom can never provide the individualized attention that homeschool can (even in homes with many children). Besides, you love your child more than the most patient and gifted of “professionals.” I know; I was one.
School is so restrictive. We simply don’t have to follow all those “rules” that are created simply to manage a large group of children (and often their parents). My heart breaks for the trauma Sarah has faced, but how blessed she is to now be home with her parents!
Jimmie, thank you so much for the kind words – and your support!
This is a good reminder to me too – I want to take the opportunity to thank all the professionals who loved and cared for Sarah in every way they could. There were a LOT of people who loved her, and the ways in which she “fell through the cracks” were absolutely not a failing of any individual nearly so much as they were a result of no one quite getting a square peg to fit in a round hole.
It’s funny; I do know a lot of homeschoolers-after-public-school who are adamantly against the “system;” I’m not one of them – in fact, I think it’s a great place for some kids for a lot of reasons. It just wasn’t for Sarah – and that means we’re trying to learn to be our own professionals! 🙂
Scary – but fun!
Your story is so familiar to me. Almost all of the things you describe happened to us as well. Our “no turning back” point happened in the 3rd grade and we started homeschooling last year. My son will be going into the 5th grade this year at home and it was the best decision we ever made.
Sometimes it’s just nice to hear you aren’t the only one it happened to.
KC, that is INCREDIBLY true. I’m so glad I’m not alone, though of course I wouldn’t wish this on anyone, but I’m just glad both our families have come out to the good 🙂
Came over from Jimmie’s “New Homeschool Blogs” and was so moved by your story here.
We have watched and prayed over our children and have learnt (the hard way) to heed the Lord’s report before we heed any “specialist’s” report of our child. He knows them and is able to bring each child to the fullness of their life and calling. No cookie-cutter jobs!
I agree with Judy’s comment – just love the phrase – “Twice Exceptional”!
Many blessings, Nadene
Nadene, thank you SO much for stopping by, and for your kind words! I know the Lord has plans for my daughter to prosper, “to give her hope and a future!” … I just need to keep reminding myself to trust and dwell in that promise! Your reminder was what I needed to hear today; you are a blessing!
Reading Sarah’s story was truly like reading about my son, Logan. Logan has been diagnosed with ADHD, mild OCD, anxiety, and SPD. He is incredibly smart but has a lot of trouble “making it through the day” sometimes. He could do 3 digit addition in his head in first grade, but still has trouble dressing himself at 7 1/2. He is very small for his age and seems very immature in comparison with his peers. He has a lot of trouble with his emotions, and had several episodes of crying last year in class. He was starting to get bullied on the bus. We are going to start homeschooling him this year. I am excited at the prospect, but also praying for LOTS of patience. He is the oldest of my 3 children, but definitely requires the most care. Reading your blog has given me renewed hope that we are doing the right thing.
Oh, that sounds so familiar! I will keep you guys in our thoughts – and please stay in touch and let me know how the homeschooling goes! I truly believe it was the right thing for us and I pray it will be for you as well!
Reading this now, after I have been reading your blog for awhile makes me realize how wonderfully RIGHT your decision was. I am sitting here brokenhearted at the rough times you had but so joyous because I have seen and read what wonderful times you are having now. Thank you for sharing this journey Joan. I have so enjoyed reading it.
Karen, thank YOU more than I can say. It was really hard – and scary – putting this out there, but I just am floored and humbled at all the support. Thank you from the bottom of all of our hearts!
I am so touched by your post. So much of it is so very familiar to me. I openly tell people of the issues with my children from my almost mute Autistic 18-year old son to the OCD issues with my 11 year old son, to the past PDD-NOS issues, which still leave their ramifications with my 21-year old daughter to her and her 15-year old brother’s seizure disorders… and yet, I speak so little about what it is like to live them, either for them or for me as parent and teacher. I know I should write about them, and yet, I somehow don’t know how. It is so hard to even know where to start. You have written with such skill and such heart. I wish I could do the same.
Phyllis, thank you more than I can say!! I always love reading your family’s stories.
While I’d love to read even more about your lives – your love and your patience and, yes, even your struggles shine through so much in your beautiful photos. Words aren’t the only way to tell a story!
God bless you guys. You have been such a blessing in the lives of your whole crew – and those of us who get to come along for the ride!
As I sat here and read your story to myself, I would occasionally read out loud to my husband stating “does this sound familiar???”… to which he agreed wholeheartedly!! Our 10 yr old 5th Grade son (which here is already middle school)is currently diagnosed ADHD, PTSD (severe unknown abuse from bio dad/girlfriend/her daughter), and that wonderful mystery known as PDD NOS. He cannot handle school at all to the point that he is a fixture in the special ed room due to not handling transition and on most days can’t even handle eating in the lunchroom. When he throws a fit at school, they call the school resource officer who takes him to the police station and decides since he is only 10 and we’ve called mental health (which is a whole DIFFERENT nightmare) that he can be turned over to us provided we take him to emergency services.
Currently he is receiving services at a residential treatment facility to assist with his behaviors both at home and school. He attends an alternative school on their campus that helps, but he still doesn’t function well in their environment. We have homeschooled him in the past, registered with our state, and the school was nice enough to call SRS to have them check on him.
After your story, I feel that when he is released, we will give the school another chance, only because he really wants a locker (you can see the thought process on his part here well LOL) and the first meltdown we will immediately switch over. I know that our school social worker will try his best to help out here and maybe when we meet before this happens, we can work out some way that he can do some activities at school provided the other kids don’t antagonize him.
I want to thank you for your story and being an inspiration. I know the feeling of dread when your child is doing self harm and there is nothing you can do to soothe them….it hurts like no one will ever understand unless they’ve been there. I just have to keep telling myself “Together, we can do this!!” I want him happy and I want him to learn through doing what he enjoys!
Oh, I will be thinking of you guys! When you were sharing YOUR story, it was just as relevant to me… right down to the point about the locker! That is so Sarah – she doesn’t just miss the forest for the trees, she misses the forest for the, like, I don’t know, caterpillars on the leaves on the trees, because she picks up on this minutia! 🙂
I am so glda you commented, and I hope you’ll come back and let us know how things go once your son returns to his school! I am always here to listen if nothing else!
Joan: truly remarkable. Thank you for taking the time to share your story and Sarah’s. It must have been incredibly painful at times and I admire your heart and sense of persistence to get your daughter’s needs met. Sarah is so lucky to have parents like you and Chris. As a special education teacher, I am often faced with students who are ‘twice exceptional’ and they are often my favorite. The schools don’t really know what to do with them, and they are often left in the cracks. I have been fortunate to have worked with some very talented and wonderful teachers who have taught me to ‘teach the whole child’ and meet their individual needs regardless. Thank you for opening my eyes.
Wow, thank you SO MUCH for your kind words! It is so nice to know that not only did you have great mentors in teaching, but that you’re living it out – teach a person, not a label or a test score. On behalf of all your students, THANK YOU. You are making their lives better, every day, just by caring and working with them.
Hi! I was amazed by what you wrote… I read every word. I seriously want to be your friend. You are a caring mom who believes so much in your daughter. As for me, I am in my ninth year of teaching fourth grade (public school)… and am “twice exceptional”: Gifted, with Aspergers. Some days, it can get immensely stressful because startling noises… even lights… throw me off. When I was young, school tended to be a challenge for me, and even though I succeeded (quite well), I was terribly bullied.
I have started seeing the importance of homeschooling more and more… and I believe, by the time I have children (I am 30), I am going to take my education degree and work from home for a while. Unrealistic expectations are pressed upon the kids, particularly during this “season” of state testing. Some students feel defeated, and it’s beginning to devastate me quite a bit. It hurts for me to think that students have to take remedial classes in middle school instead of specials classes based on fourth- and fifth-grade FCAT (Florida test) scores. Kids feel like they can’t– while indeed, they can do something. Then behavioral issues arise.
Thank you so much for your weblog. I cannot wait to learn more about everyone. 🙂 Sarah is an awesome young lady! Blessings. 🙂
YOU are awesome. And you are living proof that I did not have to accept the psychologist’s words that Sarah would “probably” never hold a job and live on her own!! She will work hard to do it – harder than I’ll ever imagine, and like you said, things that other people wouldn’t think twice about will make her days stressful – but it CAN happen.
Thank you for being an encouragement, not just to me but to your students. They are blessed to have you!!! PLEASE, please, keep in touch!!
Aw… you are so sweet! Thank you so much, Joan, for your kind words back. I’ve come a long way as a teacher– I’ve accomplished a lot in making a name for myself online as well, making resources that people across the nation have enjoyed! I never thought I’d be that blessed. As for my story, I have one to share with you, but I’ll contact you personally with that one because of course, this is the wide and open Internet. I’ve had to come to terms with some things– and have grown from many realizations. Tell Sarah that a teacher in fourth grade understands how she feels to an extent and that she’s awesome. 🙂
Of course, there are times, too, where we teachers cannot help out entirely, and that’s where it tends to hurt the most. Especially with me… I want to be the most phenomenal person I can.
I can only imagine!! I feel that pressure just in teaching my own daughter, and I can’t even guess what it’s like with a whole class and so many factors beyond your control. I firmly believe that just by wanting to be a phenomenal person and teacher, you ARE! 🙂
Thank you so much for sharing your family’s story. We just started homeschooling our 13-year-old (8th grade) after school anxiety just got too big to handle. I’m a nervous wreck and we’re still very much trying to find our way.
Deep breaths – you guys can do this. Just remember (and this is STILL something I have to tell myself frequently) – the anxiety now on the worst days is NOTHING compared to what it was in public school. It’s hard to imagine how we all made it as long as we did. We’ll be thinking of you and your family!
Many thanks for sharing your story, Joan. My son, a 6th grader, struggles with SPD, motor skill delays, executive functioning issues, etc. and his school experience so mirrors your sweet Sarah’s. He’s so smart but earlier this week told me that he “is totally lost” in class (his teachers agree) and that most nights after he goes to bed he tries to stay awake as long as he can so the night will go by slowly to try to stretch out the time until he has to go to school the next morning because he hates it so much. I’m an attorney who is in court or at my office all day but my husband and I have agreed that we can’t keep doing this to him, so we’re going to start homeschooling after Christmas.
Oh, that sounds so, so, familiar! I am so glad you commented and so glad you’re trying to find a way to make things work for homeschooling. It’s not without its own issues, but I truly believe you will find it to be a “better” set of issues, you know?
I’m thinking of you! I hope you’ll let us know how you’re doing.
I just stumbled upon your blog and while there are many things I could write in response to your experiences, the one that most resonates with me is the guilt. My son is in 7th grade now and since I have homeschooled since kindergarten, we thankfully didn’t have to go through all of the school drama that you did. However, he was in daycare/preschool. I can not tell you how many times I dreaded seeing the daycare’s phone number when my cell rang. Or how many times he had to be picked up in the directors office. He struggled so much and it was so painful to watch. I hated the fact that no one in these environments got to see the best of him. He is an incredibly smart, kind, and funny boy. But they only ever saw the bad. And if I had a dime for every time someone said, “You need to be more consistent”, I would be rich! I seemed to be the only one who thought that something other than bad parenting was going on. Not that everything was wonderful at home. I remember well the tears both of us shed. I remember well the constant worry about him. All of the little ways I had to make sure his life went smoothly. And all the well meaning people who said I was coddling him and that he would never learn to behave if I made exceptions for him or monitored him to closely. But what they didn’t understand was that if I took my eyes off of him for 2 seconds, he’d be gone. If I made him sit through the loud praise and worship at church, he would be in pain and cause everyone around him to be distracted. And that’s just the tip of the iceberg.
Because I homeschooled starting in kindergarten, he has never officially been diagnosed with anything. Although ADHD, SPD, and on the spectrum have been tossed around quite a few times with various medical professionals. But because I spend so much time with him and have tried to educate myself as much as possible, and followed my son’s leading, he is doing wonderful. He still has episodes, as we call them, but he has come so far and it is so rewarding that people are finally seeing how amazing he is.
But somewhere along the line I became angry with all the well meaning family and friends who felt the need to tell me how to parent. I became angry with strangers judgmental looks when we were in public and he began to act up. And if I’m honest, I resented all the extra work & effort it was taking just to help him through the day. I even found myself being slightly jealous of people who’s kids were noticeably different. When their child acted up at the store, people would try to help or just say an encouraging word. When mine would act up, I would get the look. I’m sure you know the one. And if I knew the person, or felt the need to explain that he was feeling overwhelmed with the noise or lights, the judging look became worse. I was just excusing him.
I’m sorry for the book I am writing in your comments but I wanted to give you a bit of background to show I understand. You may have dealt with the guilt already but just in case, I wanted to write you, and maybe anyone else reading that struggles with guilt over feelings of anger and resentment, that it is normal. You are not alone and you are not a bad parent. And if we put to much focus on it, it will eat us alive. It will make us question our choices for our children. So we can’t let it. We need to cling to every victory in our children’s lives, whether big or small. For example, my son just started drinking out of a water fountain. It may not seem like a major accomplishment but for someone who would rather get dehydrated than use a fountain, this is BIG! And little by little the people around us will start to see how awesome our kids are. There will be people who knew them when and now can look at them and see how far they have come. The judgmental looks will start to be replaced with encouragement and we will be able to breath again. We will be able to proudly share our amazing children with the world. And maybe, just maybe, we can have give that mom in the store with a screaming child an encouraging look or word.
Thank you for sharing! I read this and had tears streaming down my face. I can relate. Our child is not autistic but was struggling emotionally and was completely burnt out. We had been doing a cyber charter program and this year (grade 3) he has been absolutely miserable. The curriculum is ridiculously disorganized and either overly simplistic, or completely advance for both age and grade. Unfortunately, because the program is part of the public school system, we needed to do the mundane work which bored him to tears, which left little time to fully discuss and teach the more complex materials. I’m glad I’m not the only person who believes that as parents we can do better by our children! Bravo for all your hard work and dedication. It looks like your little girl is thriving and is very happy!
Maria, thank you so, so much for your kind words! My little girl is now a beautiful, wonderful, MUCH HAPPIER 16-year-old. I am so glad that you are exploring what other options are available for you and your son… and please do keep me posted on how your journey goes!
I just happened upon your story while searching the interwebs for evidence that 2 full-time working parents can find a way to homeschool their middle school child. So many aspects of your story are too familiar to us, from the refusal of the school to accept an outside diagnosis from an expert, to the bullying by kids and adults alike. Thank you for sharing this. I feel less alone and more empowered to do what is right after reading this.
Erin, I’m so glad you found us… and so excited for you that you’re willing to try something different. It’s not easy, I’ll be honest. But it has been SO worth it.
Thank you for writing this. We have a different set of issues but the experience of figuring it out was very similar and also resulted in homeschooling suddenly. So few people can really understand the path our family has been on, and I feel like you are one of the ones who TOTALLY would understand!
Summer, that means a ton to me!! I am so glad hearing our story helped!
Hi. My daughter is 13 now, we pulled her out of public school at fifth grade. She was having panic attacks in fourth grade. We knew she had ADHD. At 10 she was diagnosed with ASD, SPD, OCD, Anxiety disorder, depression, numerous issues. I am so glad I read your story. My daughter loves learning again.
Joann, I’m so glad to hear your daughter loves learning again! So does Ashar (at least most of the time!) and that is probably the single biggest thing I could have asked for when I started this journey, along with how much better his mental health is (also at least most of the time!)