It has been noted that my last two entries ("Truth can be a monster, too" and "A question of faith") are almost completely contradictory. They are. They are also both entirely accurate representations of my emotional state at the present time.Funny how that works, the whole "people are complicated" thing.
The truth is that yeah, this is hard. And while I won't attempt to speak for Julie here, I personally feel like we're all failing Schuyler right now. Everyone who is supposed to be helping her is falling short. By issuing and endorsing this report and suggesting in the meeting that full integration for Schuyler is a very unlikely scenario, I feel like Schuyler's team at school is letting her down. I think I've made that clear.
But more importantly, in not understanding until this meeting exactly how much of a Potemkin village her mainstreaming experience has become and how far behind she has been allowed to fall, I have failed Schuyler. And not just a little, either, but in huge, glaring, unforgivable ways. I was supposed to know better, I was supposed to be watching for this, and I was supposed to be reaching her. I didn't.
And yet I still believe in her, even though I understand that perhaps I am setting myself, and probably her, up for sadness and disappointment. I'm still not accepting a future for her where she's unable to catch up to her classmates, even though I will love her with the same burning intensity and the same sense of pride if she doesn't. I might be wrong to fight like this, but she's so smart and so inquisitive and so insanely positive about the future that I'd feel like a completely different kind of failure if I suddenly started preaching acceptance and welcoming everyone to Holland.
On a good day, I vow to fight and say that her team is wrong about her. On a bad day, I understand that they're probably not wrong. And then I vow to fight anyway.
If you'd like to know how I feel right now, remember the Alamo, so to speak. Even if you're not a Texan, you probably know at least the bare essentials of the story of the Alamo. And so you understand that when the defenders of the Alamo entered the fort as the Mexican army arrived in San Antonio de Béxar, they weren't thinking "Oh crap, we're going to die in here, and the best we can hope for is to have a bunch of middle schools named after us all one day." They believed that help was coming, that all they had to do was hold on until the rest of the Texian army arrived.
But it is a point of pride here in the Republic that after the siege began and word came from outside that no reinforcements were coming, most of the soldiers stayed to fight, knowing that defeat was all but certain.
I feel a little like I'm standing in my own little fort, reading a report that says our reinforcements aren't coming. And I know I'm going to stay and fight, to the last bullet. But yeah, I now understand how this probably ends.
Like I said, that represents a not-so-good day.
I read your book a while back and have lurked (god, that sounds so icky) on the blog for a bit...which makes me an authority on exactly nothing, but I hope for you (and Julie) that you can go a bit easier on yourself. No matter how you feel that you've "failed" your beautiful daughter in this situation, it is clear from an outsider's perspective that you are far from a failure as a dad who loves his girl and does his best (and yeah, our best never feels like enough -- sometimes it isn't exactly enough) for your girl.
ReplyDeleteBased on what I've read, I venture to guess that you will keep on doing what you're doing: loving Schuyler and being her very best advocate. It's what we all do for our kids, though I'm not pretending to know the unique challenges that you face. But you are a tremendous, strong, stalwart advocate. And that, along with the person she is, is more than enough for her.
And for what it's worth, I trust your intuitive and documented observations that she is bright, bright, bright. No educator, no matter how well-meaning, can really define someone's innate brightness.
You may be at the Alamo, but even through the weirdness of the internets, you are not alone there. So many wish you and your daughter so very much.
Hang in there, good dad. Keep on advocating, as I know you will.
Speaking as a grown-up kid: I think it's a good thing to fail your kids once in a while. It's how they learn that everyone fails sometimes, and that they are worth loving even when they do.
ReplyDeleteI think this is a perfect post to describe most of us who parent children with learning disabilities and special needs. There are some things I cannot deny that are wrong with my son, however we trudge on, making the best of it, searching for answers, and fighting the good fight. We have won a few battles, but the verdict is still out on if we will win the war. And really none of us will know that until our kids reach adulthood.
ReplyDeleteSo, how about buying all the experts and teachers and evaluators and whomever -- the people you can GET to share your opinion and back you up when you need the backup -- to get Schuyler through all the schooling/evaluations/meetings/etc. to her 18th birthday? Throw money at the problem.
ReplyDeleteI'm serious. You may not like it, but it's the way things are in many ways. I have my own experience with this with my own health care. Take the public schools out of the equation. Work hard, make the money, risk and reward. What is preventing you and Julie from doing this?
One thing I have come to realize is that we ALL fail as parents. I'm not saying we all abuse our kids or neglect them or that it's okay when parents fail kids. Just that raising a child without ever failing is an almost impossible task. Part of it is that different kids need different things from their parents. I could be a perfect parent to one child and do the exact same thing for another and it not meet any of their needs. Another part is that it's a job that requires different things of us each year or month or day or hour. We can have fixed every problem only to find new ones have cropped up or old ones solutions are no longer working. We're like the little dutch boy with his finger in the leaking dike only to find that 3 other leaks have sprung just outside our reach. And the final part is that sometimes we just fail because we're human and we make mistakes.
ReplyDeleteSo yes, you've 'failed' Schuyler... in the same way that good and even great parents daily fail their kids. But it's not unforgivable or even unreversable. If the problem is that the school failed her and you didn't notice, then you can fix the problem and even undo a lot of the damage. Your problems with Schuyler's previous school and the way those problems were eventually overcome are proof of that.
And if your failure was simply that you loved her too much, had too much faith in her abilities, and had too much hope for her future... I wish we all had dads who failed like that.
I know that my daughter will not be a prima ballerina when she grows up (being able to jump is kind of a requirement). And she'll know too, eventually. But I always figured that my job was to be the one who tells her what she can do, because the world will tell her what she can't. It's an impossible balance, really, but I don't think you've failed her at all. Imagine if you had parented her believing all those things they said were true, how different a child would she be?
ReplyDeleteAmen to BeautifulWreck--that IS just it, isn't it?...no one will know how things turn out til it turns out--its just our job as parents to keep championing our children. One day we are fearless warriors the next we have to put down our swords, take a breath and a swig of grog by the campfire....which when we do, feels a lot like conceding. We are not--Thanks again Rob for your honesty and authenticity--
ReplyDeleteAnd btw...for the rest of you who like me did't know and might not admit it...if you look Potemkin village up on wikipedia, it gives a really nice description....
So, how about buying all the experts and teachers and evaluators and whomever -- the people you can GET to share your opinion and back you up when you need the backup -- to get Schuyler through all the schooling/evaluations/meetings/etc. to her 18th birthday? Throw money at the problem.
ReplyDeleteI'm serious. You may not like it, but it's the way things are in many ways. I have my own experience with this with my own health care. Take the public schools out of the equation. Work hard, make the money, risk and reward. What is preventing you and Julie from doing this?
With all due respect, how does throwing money at the issue even make sense?
What should we do? Move to an affluent community that puts funding into their public schools? Did that.
Should we put Schuyler in a private school? Even if we searched out a good secular private school that we could afford, we'd lose the protection and force of federal law, the only thing that guarantees Schuyler an education at all. IDEA and the ADA are crucial tools for families with disabilities. No smart parent throws that away unless they have a sure thing to take its place.
Money's not the issue here. Schuyler's issues do not stem from our laziness or poor earning power. Well, of course they don't.
I've spent the better part of the last week reading through all your posts here on Blogger, learning about you and Julie and Schuyler. There were a bunch of times I wanted to comment on something then reminded myself that the post I was reading was 2 and a half years old.
ReplyDeleteEverybody fails their kids at times. When I graduated from college and, sort-of, became an adult, one of the first things I did was get my hearing checked. When I told my mom how severe the loss was, then when my "good" ear started to fail, she just looked so defeated. She's firmly set in "anger" right now; every time I ask her to repeat something, she gets mad. I've stopped asking, but I don't think she failed me. She did what she thought was right and listened to the doctors when they told her I was faking not being able to hear.
That's neither here nor there...
No matter what happens, Schuyler will remember you and Julie doing everything to support her. Always being there and sticking up for her whenever she needed you.
It's what parents do, I think (not being a parent myself I can only guess). Fight for her best interests every step of the way. Don't let the school give up on her. She'll remember her dad as the guy that always fought for her, never backing down regardless of the result.
Gosh, looking at that description, I think I want you to be my dad! :)
Well said, Karen. I concur. And Rob, I'm glad you share your feelings anf thoughts from both sides of the continental divide.
ReplyDeleteLONG LIVE THE ALAMO!
-amylia
I don't think you failed her at all. You have given her every possible opportunity. She is where she is. Anyone reading your blog can see how hard she works and it seems like the district has given her a lot of opportunities. Do you think that if they or you did something else she'd be ahead of where she is now? It doesn't seem like you really think that. (Maybe I'm wrong). So, apart from wanting the district to believe what you do, that she can catch up by the end of middle school what do you think they should be doing that they are not planning on? Maybe that needs to be the focus. And frankly given where kids need to be at the end of middle school in many disritcts it does seem unlikely that she may catch up. My 8th grader was expected to do what was once Highschool level geometry and read books like Romeo and Juliet. There were many kids though with IEP's who just couldn't meet this standard and have stayed in Special Ed classes in High School. They may not be going on to say be Physicists, but they will go on to satisfying careers and happy full lives.
ReplyDeleteWhen Hannah was first diagnosed at 8 years old. . I decided that if I ever wrote a book on that part of our journey, I would call it. . ."First, You Cry". I realized that I needed to mourn the death of the dream that we had, that every parent has for a "normal" life for their children. I needed to give myself time to grieve. . .and then deal with reality. . .or I was NEVER going to be any good to Hannah. . .and we would never be able to wade through all the crap we went through to get to who she really was; what she could do, in reality; what she had a passion for and how we were going to help her find a measure of success in that. (I have never quite described the last 13 years of our life like that before!) REALITY is. . .Hannah will never drive, Hannah will never operate above a 4th grade math level. Hannah will ALWAYS have to have help making it through a day. Hannah will always need someone help her THINK. BUT. . .Reality ALSO is. . .Hannah graduated from high school last year. Hannah got a part-time job in a field that she loves. Hannah gets a paycheck every 2 weeks and was jazzed the first time she got to take ME to dinner. Hannah has LOTS of things that she wants to do in life.
ReplyDeleteWe can't do anything about the things that she CAN'T do. . .but we can capitalize on what she CAN do and LOVES to do. . .and we are looking at that as a win.
Believe me, that perspective was a long time in coming. We all kind of grew into it together. We are moving into the uncharted waters of adulthood now.
No advice. . .just a view from a few years down the road.
"but she's so smart and so inquisitive and so insanely positive about the future"
ReplyDeleteYou haven't gotten a report that your reinforcements aren't coming. Your reinforcements are right there, in your "smart and inquisitive and insanely positive" child. It's her attitude that really matters for her education. It's her energy. How much she wants it. How many stories are out there of people who overcame all sorts of tremendous odds to be all different kinds of successful? In your shoes, I would be fighting too, but fighting more to protect that energy, to feed it, to make sure it grows so strong that nothing and no-one can ever set it back. So that she knows that she's got advocates - not so much against her particular monster, or the ignorance that exists at all levels about what having it might mean for her - but against the toughness that life is in general. As long as that energy is there, ways will be found. If you can teach that confidence, that creative problem-solving, that persistence, not necessarily directly, but also by example, you give her the tools every child needs to make it through the world without you.
How do you think you've failed her if, as you say, you did everything you could to learn about her brain defect and to advocate for her?
ReplyDeleteSounds like you're angry and frightened by the assessment that labelled her as mentally retarded and you're taking your anger out on the people who delivered the news and on the commenters on your blog whose views you disagreed with.
You don't want to hear, "Hang in there. She'll fool them all, graduate from Harvard, and go on to make the world a better place, probably as president." And you don't want to hear about making lemonade out of lemons and turning the frown upside down.
You're just pissed off.
That's understandable. You've got a kid who can't talk and who may start having life-threatening seizures at any moment and who gets mocked by other kids and has no friends. Even without this new stuff about retardation your life bites.
It may be that your battle turns out more like Bastogne than the Alamo.
ReplyDeleteWhen I commented last week about our 20 year old daughter Daniela, I said that we were in a place where we were no longer in denial or grieving about her diagnosis of intellectual disability. I thought I should expand on that a bit. I don't want you to think I was saying that YOU should in anyway do that at this point in time. And acceptance for us does not mean we gave up or will ever give up. We just don't regard the term with any emotion anymore because it doesn't matter - what counts is who our daughters are to us and the world and that is something extraordinary.
ReplyDeleteSchuyler's disabilities and obvious abilities are so unique that I don't think any "expert" could know what her capabilities will be as an adult. In any case, it is always better to shoot for the stars whether you end up reaching them or not.
There may be times when you will become so frustrated that you need to take a short break and also give your daughter a break from trying so hard and that's okay too.
I have often felt like a failure in trying to help Daniela and as an adoptive parent wondered whether another family could have helped her more than we have. We had a family tragedy several years ago and Daniela's issues took a back seat for a time. She actually grew a great deal during that time and became much more independent. When we were able to get back into the swing of things again, we found she was able to do things we never imagined her doing (including pre-algebra with a calculator). In fact, learning has become much easier for her in the past few years and I don't see signs of that stopping. We only accept and use the ID diagnosis when doing so serves her in a positive way, otherwise, we don't even think about it anymore.
I think your daughter already has amazing poise (and ours only acquired that recently). That trait requires innate intelligence and if it's obvious to me from my distant vantage point, it must be very strong indeed. It will serve her well as she becomes older and begins to advocate more for herself. You are absolutely right to fight for inclusion in every way you think it will benefit her. Shoot for the stars - Daniela is so close to them now that she can touch them.
Rob, I don't want to belabor the point about money, but I think you're putting aside the issue a bit.
ReplyDeleteMoney has been a key part of your story. Face it, you could not initially afford to purchase a communications device for Schuyler. If you were not so internet savvy and set up online fundraising, would Schuyler even have a communications device? A device that allows her to participate in a public school system uniquely set up to take advantage of these devices?
I have a friend who came off as dumb as a box of rocks in high school, but now is a successful Wall Street guy. (At a firm that was NOT bailed out by the government...) He also has a young son who has profound deficits, both mental and physical, because of cerebral palsy.
My friend and his wife did not attempt to put this child in the NYC public schools and work the system. They don't talk about him needing protection from the government through ADA and such.
Their solution? Throw money at the problem. They hired live-in help, tutors and physical therapists. They take him to a winter school where he has learned to stand up and ski with assistance. They are always organizing activities and therapies that push their son forward developmentally. I swear these people don't sleep.
Yes, these parents get the best that money can buy for their son. And while he could have been born to a less fortunate family, he was born to them, and their access to money has improved his life tremendously. They didn't put him in a home as advised; they opened their wallets instead. However, one thing they have in common with you is that they have always said, "Our kid has potential and we will do whatever we can to get that out of him."
So if you have this attitude, is it easier to go forward with money, or without?
I'm jarred when you say, "Money's not the issue here. Schuyler's issues do not stem from our laziness or poor earning power." Of course not. But don't delude yourself into thinking that there is at least the possibility that money could improve "the issue."
I get a bit of a feeling that you like "the fight" on some level, Rob. There is always some teacher or administrator or clinician who is an idiot and who you are ready to do battle with. I'm not saying this is bad, who doesn't like going after a bureaucrat once in a while?! But what if you did find Schuyler a private school, or found the best person who could teach her at home? What if you didn't have to fight anymore?
Sure, the tough part is how to go about it. Me, I busted my ass in Silicon Valley at a job I hated for 10 years. But then I got sick, and fortunately I can now buy the time of the best doctors in the country. And I was making just barely $100K salary a year, not piles of cash and stock options.
I know we should all be on a level playing field and public education is great and bad things like Schuyler's Monster can happen to a rich person as easily as to a poor person...but "Money's not the issue"? Really?
Anonymous posting at 8:55
ReplyDeleteOf course Schuyler has the chance to fool them all, graduate from Harvard, and go on to make the world a better place, probably as president. Ever heard of Helen Keller, graduate of Radcliffe, author of 12 books, world known activist, and former child without adequate communication abilities? Sheesh!
She could be MR. Or she could be brilliant. It's kinda hard to tell when she can't fully communicate what she's thinking.
And as to Rob's life biting... maybe it does. But if it does, it's not because of his daughter. The people you love make your life harder, but not worse.
Jeeze, some of these comments.... congratulations, anon money man, for finally managing to work in your own affluence into the conversation... you must be so proud. What a brilliant and loving plan you've hit upon, get rich, then pay someone else to raise your special needs child, teach them how to ski, and keep them away from you so you can keep raking in the dough.
ReplyDeleteRob, I think the Dutch boy and the dam image really fits here. You may have missed details about what was going on at school, but in the meantime, you were catching and nurturing so much else. Giving her a wonderful basis for self esteem, and encouraging her inquisitive enthusiastic self is really so much more important at this point in her development than nuts and bolts educational details. The multiplication tables can come later. You have preserved and honored her bright essence. No failure there.
-e-
Wow. There are some rough, rough comments here, comments that even I had trouble reading. I can't imagine how they might make you feel, Rob.
ReplyDeleteAnyway, while I hate to toss unsolicited advice out there, still I wanted to very gently suggest an independent evaluation. I have personally known of several situations where having this done made THE WORLD of difference for the children in question.
Doing this doesn't mean you're giving up on the public school system, it only signifies that you, Schuyler and her school might all benefit from an independent point of view. I know it costs, but possibly it would be well worth it?
I wish you guys lived up here (Philly), I could recommend someone.
Your daughter is a living light. Always have faith in her.
I don't even know why you leave comments open sometimes...why do we need to listen to morons?
ReplyDeleteAnyhoooooo....
Everyone fails their children sometimes, though I really don't think you have. I think you are a fantastic, loving, champion for your daughter. I admire you as a parent. Dust yourself off and keep fighting.
First of all, even if Schyler never catches up to her peers, it seems unlikely based on how competent she is that she will live with you for the rest of her life. I know you are OK with that, but Schuyler seems way to together to need to do that. I just spoke to my mom about my cousin who is MR and she lives completely independently, drives to work (as a day care center worker where she is beloved!) and has a close group of friends who either live independently or in a group home nearby. She gets help with her checkbook and bill paying but other than that is on her own. And the truth is I doubt any "expert" can really judge Schuyler fully at this point, given her limitations in communications, so it seems like she really has pleanty of time to blossom even more.
ReplyDeleteTwo years ago, "they" told me my son had a low IQ. This year, "they" told me my son had an average IQ. Both times I argued with them. Because "they" are wrong. They are using imperfect tests on an unusual child who every educator who meets him says is unlike other children they've ever taught.
ReplyDeleteI've used those test scores and predictions to get what I've needed, and then tried to put them to the back of my mind. It's not always easy. And I'm not always successful.
And when those scores start to hurt my kid, instead of help him? That's when the "throw money at it" thing would come in handy. For me, it meant hiring an educational advocate who helped me get through some difficult IEP meetings and ask for (and get) services we'd previously been denied. But there's a part of me that would also like to throw money (if there was any to throw) at a kick-ass neuropsychological evaluation--finding someone who would find the RIGHT IQ TEST for my kid, the one that would actually give an accurate evaluation of his potential...not of where he is now, lost in a learning environment that can't reach him properly. Or, if not the perfect IQ test, maybe just some insights into how best to teach him and reach him.
It's those latter two things that I wish for you, Rob, and for Schuyler. Especially that last one.
Would that all kids could have that last one, actually. Special needs or not.
We're soldiered up and with you, fella. Nothing else to be said. (But I will ...)
ReplyDeleteWe've only been slaying since some dreadful day in February when our beautiful boy was preliminarily diagnosed with LIS (but the wise WD has reclassified as 'simplified gyri', don't know how that differs from micro gyri and I'm in the field!). Gabe is a fab 7 weeks and we've just started your great book -- did you write it for us?!
I often feel like we're defending against the docs and the rest that don't know quite what to make of this cute thing that doesn't fit into any box.
I can see his soul and his potential when I look into his eyes (that are alert, his lungs that don't need a respirator, his feeties that will kick the shit out of you, and his pouty lips that have bottled perfectly).
Despite his huge strides and F/Us, the NICU wanted to send us home with palliative care and said, "They'll have morphine and ativan for him". Yes, let's just give up now. WTF? We've had our own Alamo moments and although at the end of the day it was my fight, our spirited soliders and soliders in spirit, helped me through (listen to me with my 7 weeks of insight).
For you and Schulyer and Julie I wanted you to have forged our successful trail for all of us.
Report or no, you still are.
Rest well and know that there are reinforcements, even though they weren't in that room with you.
Regards from Minneapolis,
Ruby, Hunter and Gabriel (well, he's sleeping but would be aboard)
To the other Anonymous here, who said:
ReplyDeleteJeeze, some of these comments.... congratulations, anon money man, for finally managing to work in your own affluence into the conversation... you must be so proud. What a brilliant and loving plan you've hit upon, get rich, then pay someone else to raise your special needs child, teach them how to ski, and keep them away from you so you can keep raking in the dough.
First of all, this person talking about money is me. I am a woman.
I didn't mean to "work in [my] own affluence into the conversation." When I hear "Silicon Valley," I think "millionaire," so that is why I quoted my salary at $100K, to show that I'm not one of those millionaires, but I have been able to earn a good salary, invest wisely and be able to pay for health care services when my insurance's coverage is minimal.
Silicon Valley millionaires are a dime-a-dozen here...I worked next to many people who were run-of-the-mill engineers and such who had worked IPOs to their advantage and had millions of dollars in the bank in their twenties. Apart from these bonus babies, I worked with and for people who earned millions in salary before you even got to the stock options. My $100K base salary in Silicon Valley was nothing, trust me. You're talking about an area from San Jose to San Francisco where a shitty one-bedroom apartment costs $3,000/month.
It is my friend -- not me -- who works on Wall Street and is able to pay for top-notch care and education for his son with CP. He works a lot, yes, but is home every night and travels minimally for business. His wife is home all the time with the son and their other child, a girl with no disabilities. Their ski vacations are family vacations. Is it OK to slag them because they do what they are fortunate enough to do?
Anonymous, I hope this answers your questions.
"Scout, no matter what anybody says to you, don't you let 'em get your goat. Try fighting with your head for a change ... it's a good one, even if it does resist learning...Simply because we were licked a hundred years before we started is no reason for us not to try to win." --Atticus Finch (via Harper Lee, To Kill a Mockingbird)
ReplyDelete"You always were the one to make us stand out in a crowd/Though every once upon a while, your head was in a cloud/There's nothing you could never do to ever let me down/And remember that I'll always love you." --Badly Drawn Boy, "A Minor Incident"
I have been told that leaving random quotes as comments is a bad and inexplicable habit and only serves to confuse people, but your post made me think of those two things.
I just want to say how much I dislike the term and the idea that we are "failing" our kids.
ReplyDeleteI know it feels like it, but being aware and alert, and fighting the good fight, and never giving up, and aiming higher, and pushing when the walls are thrown in front of you....that isn't failing. It's the sucky part about parenting, and it comes up harder and faster when your child doesn't fit into the status quo.
But failing? Wouldn't that be ignoring your child completely, or institutionalizing and wiping your hands of it?
I struggle with this myself, but as long as I am pushing for my daughter so that she can continue to progress, as long as I am struggling to keep everyone else optimistic about her future, then I am not failing.
I may not be doing as well as I want, or as well as I think I should, but tomorrow's another day and I will rally.
I will not "fail" my child unless I completely give up.
That's my story and I am sticking to it. ;)
Rob you haven't failed Schuyler, and I think you know that. You just got thrown off the rolling log. But the fact that you will get up and get back on says more than anything what a great father you are and how lucky Schuyler is to have you and Julie, but I think deep down you know this too.
R.
Anonymous woman who is talking about money here again...
ReplyDeleteTC says:
But there's a part of me that would also like to throw money (if there was any to throw) at a kick-ass neuropsychological evaluation
This should be $2,000-$3,000 from my experience, and I do have experience in finding a psychologist with a Ph.D. to administer an eight-hour battery of neuropsych tests for a family member with specific needs. Most candidates will allow you to interview them for free so you can get a handle on their philosophy, testing methods used, etc.
I guess this is my question to everyone who thinks I'm mean...can you not dig a few thousand out of your pockets to get crucial testing done? How difficult is that? Can the wife or husband pick up extra shifts or get a second job? Can you borrow from family members or friends? Is your credit good enough to borrow from a bank? Can a husband or wife get extra schooling to land a better job that will reap rewards in the long term?
How willing are you?
Rob, can you say, in light of the latest "lowdown" from the evaluator, "Julie and I are going to put $10,000 aside this coming year to hire a teacher (or whatever) to work privately with Schuyler so we can fulfill our (GOAL) in one year's time instead of the two year's time it would take through the public school's." (Or, we're going to make this investment because the school is saying that Schuyler isn't worth the investment because in their opinion her abilities are limited...)
I am trying to get a sense of your goals vs. "the fight" and how far parents might go to get this accomplished. Are there things available in the public sector (public schools, etc.) that money can't buy? When do you say, "Screw it, I'm taking my kid out of this and providing my own services because the school can't or won't," etc.
This is all I'm asking. Money can be good and not always evil.
And yes, I don't have children. But I have $25,000 in cash set aside for my health care this year. I can't work because of my illness. My husband can work and works hard at a high-paying job so we can have this luxury, and I thank him every day.
Do people do this for their children? That's all I'm asking...When the public schools/etc. fail you, do you take matters into your own hands and buy what you need for your child? Have you had only enough children for what your budget can allow?
These are very practical questions, not "mean" ones. Rob has written about money concerns in the past. No one may like the implications of money and class, but they are most definitely in play.
I wish I knew more, so I could be more pragmatic in sending and being reinforcements for you. But from here, what does "MR" really mean? From the families I know here, and the folks I know, I keep feeling like people don't really understand what the realities of MR are, what people can and cannot do, and the different thread and types of "intelligence". My Joey can do amazing things with numbers and math, but can't negotiate a playground conversation or group make-believe game. So does that make him MR, because his processing is slow? For many folks, it does! And it just makes us shake our heads.
ReplyDeleteGo for that independent IQ eval, and see if you can get an independent educational eval. Get a clear, independent snapshot of where Schuyler is right now, and start from there. Then, don't be afraid to tap homeschooling resources. They can be a great support even if you are not homeschooling!
Yeah Rob, duh - and buy the kid a pony while you're at it. If you really care about her you'll buy her TWO ponies.
ReplyDeleteI'm curious what their general evidence is that she couldn't handle grade-level work. Is it the work load? Comprehension? Ability to express her understanding?
I know you're exhausted, feel free to ignore this or wait till you've re-charged a little. I'm just pretty skeptical myself, having been personally failed by schools in your area (though one of my schools WAS named after an Alamo hero). And I think the workload placed upon fourth and fifth graders is ridiculous for neurotypical kids.
Another thought, probably not helpful but still.
ReplyDeleteAsk Schuyler the following questions...
1. Which of the following animals do not have teeth?
A) Dogs
B) Goats
B) Horses
C) Birds
2. What kind of work does an archeologist do?
3. Is ocean water salty?
4. Are there clouds on the moon?
5. If you see two giant wires coming out of the wall and you don't know what they do, what's the ideal way to find out?
A) Ask someone
B) Try to look it up on the internet
C) Find a book about electricity
D) Grab the wires with your bare hands and stick them together
If she answers even one of those questions correctly, then she is functioning at a higher level than a neurotypical adult I know who not only graduated high school with honors but went on to become a teacher in the state of Texas.
I've followed your blog and Schuyler's story ever since reading your book. That said I am by no means an expert. I am though a parent and my oldest has Asperger's. It seems to me that as parents we are constantly being told that our children cannot do this or do that (this is true even of neurotypical/mainstream/normal or whatever term you wish to use children.) My son's kindergarten teacher told me that if I was "lucky" he would find a job where he could put things together (what five year old boy doesn't like Legos?) That was 17 years ago. He is now 22, self-sufficient, planning on college and a career in law enforcement. BUT if he did find a job putting things together I would be no less proud than I am now. As far as I can tell you have not failed Schuyler because you never for a moment stopped believing in her. Each accomplishment is not just seen as a stepping stone to the next but celebrated for the joy that it is. It is those who stop seeing Schuyler for the bright, unique, joy-filled girl that she is and place her in a box that confines her and expects her to move no further that fail. You've given Schuyler a world full of opportunities, friends and experiences, all of which has expanded her ability to learn, to laugh, and to see outside of herself. That is a lot more than even some of the most "advanced" children in some schools ever receive.
ReplyDeleteRob,
ReplyDeleteKeep questioning the answers. That is the best thing you can do for Schuyler. No harm in that-even when it isn't popular. She deserves it. Her creative way of expressing herself cannot be summed up on any test. I don't care what the experts say.
I love your idea of soccer! You will find the right environment/coach for her. For my son, it was the YMCA swim team.
I love reading your blog, it reminds me that I am not alone! Thanks for your honesty.
Love the art! Couldn't figure out how to say that in relationship to the guest post . . . couldn't find the comment button. Especially loved The Queen of the World. The girl has a great self-image! And I'm sure that's due to you and her mom reflecting her back the way you do.
ReplyDeleteI want to start by saying how much I enjoy your honesty...Your frank, no bull-shit view of things. It's hard to find people who are as honest as you. I find it so inspiring.
ReplyDeleteBefore I go on about how you've inspired me, I want to comment about Schuyler. I honestly don't believe you are fooling yourself about her potential. I was an educator for six years. I've seen how the special education system works (I worked in Garland), and yes...they are professionals, and they know what they are doing. However, that does not negate the fact that you are the best advocate that Schuyler will ever have. YOU know her best, no matter what kinds of tests they have administered. It doesn't matter what percentage of her brain is affected...brain plasticity is scientific fact. Any effort, belief, hope, insistence in Schuyler's abilities is not wasted. I, too, loved the previous comment, "Fuck 'em right in the eye."
I have a view of the world that is not necessarily considered "mainstream." I usually keep this to myself for fear of judgement. However, in an effort to be more honest with myself, and with inspiration from you, I'm trying to live more authentically. I recently wrote a post on my own blog challenging the taboo of talking about politics and religion. Your writing has been a much needed kick in the ass. Thanks.
Go Rob, Go Schuyler. You two are heroes.
I've been reading your blog for a while, and I loved your book. I know you will always do your best for your beautiful daughter because that is what we do. Day in and day out. For all our kids. And sometimes it feels like we are failing and sometimes it feels like we're doing okay. The one thing we can't do is lay down our swords. Because in the end, we just don't know. My guess is Schuyler is still full of surprises. She's smart, inquisitive and full of hope. Good grief, I'd say that's more than half the battle right there!!
ReplyDeleteI don't mean to push aside how hard or how complicated it is, but go easy on yourself. And trust your instincts. You know your girl. You always have. And she's amazing, isn't she?
Never stop advocating for your kid's abilities.
ReplyDelete'You have my thoughts exactly as they arise... perhaps they are sometimes contradictory, but it will not be a less faithful picture of my mind.'
ReplyDeleteMansfield Park, Jane Austen.
De-lurking (from a place somewhere between Italy and Holland. I usually think of us as being in Germany somewhere...) to give you a virtual hand-squeeze, and a robust rebuff of any suggestion of failure - although I fully understand how the mental tectonic plate shift of aspirations versus practicality feels. I can't equate anything - anything - you have done or not done with my understanding of the term failure. No mortal being is infallible, but I feel your unvarying determination, advocacy and belief in your amazing daughter brings you as near as damnit in this case. You are the best judge of your child's abilities: of course you are not wrong to fight!
And... what Sarah Margaret said.
I find how you describe your family's journey refreshing. I read Schuyler's Monster almost 2 years ago, my son was 13 mo., and had just been diagnosed with PMG. I have been following your blog for about the last year and I feel comforted by how you describe your feelings and the candor of your comments. Most days if feel my husband and our parents are in considerable denial about what our son is capable of doing. Other days I feel just as hopeful that he will "catch up" to his peers, until I am let down again by his prospects according to his teachers, doctors and theapists. I can't deside which side of the fense I want to be on, but I think I am better equipt to fight for all he needs if my eyes are open. And then there is our older son who doesn't understand why his brother can't speak and acts like he is so much younger than 3, I am not sure what/how/when to explain this to him. Your insight is appreciated.
ReplyDeleteIn the end does it really matter if she "catches up" with her peers? She might in some subjects and not in others, I was in AP English Lit while taking remedial math. This is the girl who went took to her device like a duck takes to water after the so-called experts thought it would be "too advanced for poor little Schuyler" I sure wish they could see her with the iPad. You and Julie have NOT failed Schuyler. You've both done everything in your power to give her every opportunity and resource available and will continue to do so. More importantly you've taught her to believe in herself, to dream big..you've given her a place where words don't matter, where she is loved and accepted just as she is, for who she is.
ReplyDeleteThat's not failure.
And to the lovely anon who "barely makes 100k a year" a few things:
Money is not going to solve this even if millions was thrown at it. Schuyler is fortunate enough to have access to things like iPads, BBOWs and one of the better school districts, I doubt a private school would make much difference and I have no doubt that Schuyler will wind up self-taught in the subjects which interest her. Money is seriously not the problem, the problem is the school's experts have one stance and Rob and Julie another regarding Schuyler's abilities. I lean towards the Rum-Huds' assesment since they havent been wrong about their daughter so far.
To imply that unless a mom or dad work more hours, take a second job, ect ect. they are not Doing Enough really pisses me off. Especially since you don't have children Mrs. Anonymous.
Rob, if we parents don't stand until the very end... who will??
ReplyDeleteI will never be able to look myself in the mirror when those "permanent" choices have to be made when adulthood comes... If I don't fight every battle, burn every bridge there is... up until that point in time.
If I don't.. I will have failed my son.