Last week I told #1 son's story; here is #2 son's story.
The first thing you need to know is that my 7YO son is an amazing, bright, sunny, funny, intelligent, loving, loyal, curious, brave, affectionate little boy who happens to have a genetic condition known as 47,XXY. Some people refer to this genetic arrangement at Klinefelter's Syndrome (KS); I won't argue with anyone about that designation; those semantics could be a whole blog post. We'll stick with 47,XXY and argue the KS thing another day. I only bring it up because more people have heard that name.
Some of the pediatric symptoms of 47,XXY can include low muscle tone, milestone delays in gross motor and/or fine motor development, delayed loss of infant reflexes, poor suck reflex, delayed speech development, tall stature starting by age 5, continuing delayed gross and/or fine motor development after age 5, motor planning and motor dyspraxia, executive function problems, ADHD, autistic-like symptoms, anxiety, sensory-integrative disorders, epilepsy, auditory processing disorder, difficulty learning to read, delayed development of social skills, and several more. As 47,XXY is a spectrum disorder (the extra X chromosome can come from Mom or from Dad, and some people may have an extra X in just a few cells instead of all of them (mosaicism) each person is treated to a distinct subset of these symptoms, but rarely would he have all of them. Some lucky few have few to none. What is true is that Son#2 was lucky to be diagnosed-- only about 25% of males are diagnosed during childhood in the United States, despite this being a fairly common genetic arrangement, with 1/667 males being 47,XXY, and 1/500 live births being a male or female in possession of an extra 1 or more X or Y chromosomes. Please see www.thefocusfoundation.org or www.genetic.org for more information! In fact, there is a great conference coming up in April in Annapolis, hosted by The Focus Foundation!
My husband and I first suspected son #2 had issues pretty much right away, but were reassured by our pediatrician. By 12 months of age, we were certain of it-- low muscle tone, delayed milestones (not one or two, but most of them) yet signs of good intelligence and spunk were there in abundance, and our pediatrician blew off our concerns. An evaluator misreported his status at 15 months, but when he didn't walk until 23 months or speak his first words until 26 months, we finally got him some attention, though even then the pediatrician was pretty dismissive that he needed any special attention. He did, at that point though, finally qualify for some state services including physical and speech therapy, beginning just prior to his third birthday, and on his third birthday he was handed off to our local school district, still sunny, smart, friendly, shy, eager to learn, loving, and unable to climb, run, jump, get two feet off the ground, or slide, swing, or climb.
At his first IEP evaluation, we got a preview of things to come. The school district declared that he had made such progress, having actually gotten two feet off the ground at the same time in an attempt to jump, and getting up to almost 80% proficiency in speech production, that his IEP should be canceled. Then the physical therapist arrived at the meeting and lit everyone up. Very attached to Son#2, and impressed by his tough work ethic in therapy, she fought for him in a way we didn't yet know how to do, and the IEP was quickly rewritten, and it stuck for another year-- his second year of preschool.
The second year was more of the same. I left the meeting puzzled and disappointed, and wishing I had brought an advocate with me, wondering how the school could sit there with a room full of specialists, and tell me it was up to me to explain to them what his needs were and how to help him, or else the IEP would be cancelled. Weren't they supposed to have done an evaluation? And why didn't the evaluations they did do, look at more than just benchmark averages? A young, bright kid can use his intelligence to "cover" for specific deficiencies that will come back to bite him later . . . shouldn't these people who have advanced degrees in specific fields such as speech and psychology be aware of this fact? Where are the subtests? Where is the data with classroom performance showing the discrepancy between his ability and his classroom performance, and why are they asking ME to show this? Isn't this their job? Even after protesting the evaluation, we met again with what looked like the same cast of characters and ultimately were left with a 504 (a plan provided under a different law, the ADA, which provides accommodations, not services, and a lot less legal protection for the student), not an IEP (defined under the IDEAS law, which provides services and legal rights) as he headed into kindergarten, and an extraordinarily unsatisfying "solution" that for his dysgraphia and other issues, he would simply not have to complete his work. I'll stop there; the issues this brings up are rather obvious, the reasons we didn't take the district to court are not, but those issues are not the subject of this blog. The fact remains that the district deliberately was playing dirty pool with son#2 and several other children and they knew it. Off he went through Kindergarten and first grade with a 504 plan that didn't really meet his needs. We were "assured" against our better knowledge that he was performing at grade level. In short, the school dug in their heels and cancelled son #2's IEP coincident with his diagnosis of 47,XXY, and were told that it was because WE could not PROVE he was one of the over 70% of children with the condition who suffered academic consequences from it, and that it was our burden, and not theirs, to demonstrate that he had a problem (that is nearly a direct quote from the district special ed person).
What a surprise, then, to arrive at a parent teacher conference and be told for the first time, nearly halfway into the school year a year and a half later, that our son was in the "high risk" reading group, as his reading was so far behind grade level benchmarks. Not one person from the school had contacted us to let us know of our son's placement in this group. It was at this point that we contacted Dr. Carole Samango-Sprouse of The Focus Foundation, and set up a multi-day, in-depth academic and physical evaluation for son#2. We inquired about getting the district to pay for the outside evaluation, as there are provisions that require them to do so. However, they once again stonewalled us; we were now a year and a half without an IEP for our son, and they wanted to institute a lengthy process to approve this evaluator, and we were not willing to make our son wait yet another six months just to start testing, and we went out of pocket. It was well worth the effort. We ended up with a detailed report explaining exactly where son#2 was strong (sometimes, surprisingly strong! Yay!) and where he was running smack into roadblocks. The report confirmed what we already knew: We had a very, very bright little boy, whose language difficulties were causing him to go unrecognized in areas where he was strong, and thus not being permitted to progress as rapidly as he could. These same difficulties also were not being addressed, and thus were not permitting him to overcome them and progress as rapidly as he could in the areas where he struggled. All of his roadblocks were of a type that CAN be overcome, with appropriate, timely support, and the clock was ticking. The report also outlined specific recommendations for how to address our son's challenges. Upon receiving the detailed report back from Dr. Samango-Sprouse, I sent a copy of it to the school, requesting a follow-up meeting to implement her suggestions. I received no response. Normally, this "oversight" would have brought on a firestorm of protest and documentation from me, however, this brings us up to our very happy four months in Saint Paul, MN.
Thank goodness for Horace Mann Elementary School in St. Paul, MN. What a gem of a place! Son#2 was welcomed with open arms while we were there on sabbatical. Knowing that they had little incentive to invest in this child, as he was to be there for such a short time, they nonetheless said that every child is important to them, and every child will learn while at Horace Mann. And son#2 did indeed learn. He received support in every area where he needed it. He received support in areas where Dr. Samango-Sprouse's report identified needs and where they found creative ways that I never thought of to challenge him. He was encouraged to sail in areas like math where he was really strong, separating out the language problems from the math. And the other students just adopted and helped him, taking him right in and accepting him socially as one of them-- talk about "Minnesota nice!" He actually asked for additional school time, similar to his brother, showing up an hour early for school for chess club, and staying an hour late, for art lessons.
We returned from Minnesota with a comprehensive IEP in place, and were heartened to learn that son#2 was returning to his old school, to a classroom staffed by a teacher with a degree in special education! How awesome is that? Apparently not too awesome. After a long and frustrating (probably longer than legally permisable) wait, we finally met as a team. We discovered that son#2 had been inexplicably placed in the remedial math group, instead of the advanced group. I'll fast-forward, and give my favorite quote of the entire meeting. First the context: This district has nearly 20,000 students. That's correct: 20,000 students. And that's only about half of the families-- at least half have gone over the state line to better schools, gone to private schools, fled to charter schools (technically still district schools) or fled to neighboring districts. So here's the great quote: We don't know how to help your son, because we don't have very many special education students in this district. And of the kids who probably are special needs, not many families apply for social benefits; the families in this district tend to be "high quality" families who take care of their problems at home, instead of dumping them on us.
Remember, in part one, where I had a day when I filled out the paperwork to become a homeschooling family? I submitted the paperwork to the state exactly ten minutes after that statement came out of the mouth of a district-level special education person, and son#2 began staying home with me to homeschool the following week, when he conveniently (honesty) got sick (son#1 began the week after that, ten days after the state paperwork was submitted). We had two options. Take them to court, and sacrifice our sons' educations while we sucked away our time, money, emotional and spiritual and physical well-being over a course of probably a handful of years over a sysiphean task (this district has already been successfully sued over failing to provide IEP-mandated services to young students-- obviously, they didn't learn a thing from the experience). Or, pour our time, love, and resources into actually giving our sons an education.
Here's the final kicker: During the week that son#2 began homeschooling and son#1 was finishing up, son#1 was interrogated by son#2's student teacher as to his whereabouts. Then the school nurse was directed to call us and try to scare us out of homeschooling, insisting (at the principal's direction) that we probably hadn't registered properly with the state and could expect a visit from the truant officer. I wished them good luck with that, gave them the name of the state liaison to home schools, and suggested they send any such requests through her office, and asked if they'd like her email address, since I was in contact with her, as I was already quite legally registered as a state school.
We are now 2 & 1 weeks into our new venture, and both boys are showing signs of being extraordinarily happy about the change. They're working harder than ever, having both been "promoted" a grade by their new teacher/principal/superintendant/leader of the pack/momma duck, or more than one grade in certain subjects. They're taking cool subjects. They're writing on the walls and windows (a timeline and hand-drawn map), reading Homer's Odyssey (a prose version), and when they don't really grasp something, which is rare, but can happen, they're encouraged to go back and explore it in another way until they do get it, not to just forge on ahead because there's some new deadline coming up as there is in the public school classroom. We have no deadlines other than those we choose to impose upon ourselves. As a result, they're learning faster than ever, because they're eager.
And my moderate-to-mildly language-disabled child? His favorite new subjects (being taught a grade-level ahead in one case, and brand-new in the other) are . . . grammar and Latin.