So yeah, it's been a rough week.
We've been trying to find the lesson from Schuyler's IEP meeting and everything we learned, but it's complicated. The comments on my last post have been varied and helpful, everything from personal experiences of parents to those of persons with disabilities, from advice on navigating the public school system to suggestions of home schooling, and from attempts to explain what the school team may have been thinking and trying to make sense of that to the succinct poetry of "fuck those guys right in the eye".
It's complicated because this isn't like what we faced from Schuyler's previous school in the Austin area. That school, in Manor, was small and rural and unprepared for a student like Schuyler. The fact that they refused to face the fact that they were unprepared made the problem unfixable, but they started off in a very poor position to help her. (I am all too aware of how many families are in similar but inescapable situations.)
But we now find ourselves in perhaps the best public school system in the state of Texas, and certainly one of the most esteemed special education programs. When Plano's educational diagnostician comes to us with a report and an opinion about exactly what Schuyler CAN'T do, she's got the data to back it up. These aren't yokels. These are some very smart, very experienced people who see Schuyler's limitations, and the projections they are making for her aren't pulled out of a hat.
They're smart. Well, the specialists at the Yale Child Study Center were pretty sharp, too. Being smart doesn't mean being right, and for me, being dumb and desperate doesn't mean that I am necessarily overestimating my daughter's capabilities.
Still, for us to read this 19-page report and then look into the eyes of everyone in that room, none of whom indicated any disagreement with the diagnostician's prognostication, and say "This isn't an accurate picture", we need to try to understand how that can happen, and I have to convince myself that I'm not engaged in a fool's errand.
Schuyler's history provides part of the answer, I believe. Schuyler has shown everyone that predictions concerning her possibilities are a sucker bet. She's defied the predictions of smart people before. Perhaps that makes for a swell Hallmark card or an inspirational "Hang in there!" kitty cat poster, but it's due to more than her big heart or plucky spirit or guiding angels or whatever you choose to believe in.
Schuyler's unpredictability and her ability to surprise comes from that broken but amazing brain of hers. It is her monster's greatest and most enduring mystery.
According to the brain scan performed when she was three, anywhere from sixty to seventy-five percent of Schuyler's brain is profoundly affected and deformed by her polymicrogyria. That's a lot. And yet, what a doctor would expect to result in a severely impaired, totally non-ambulatory child has instead produced a vibrant, active little girl whose physical impairments are limited to clumsy hands, minor swallowing issues and some weak facial muscles. It's apparently tricky, trying to come to some agreement as to how cognitively impaired she is, but her intellectual progress has been steady and is showing no signs of flattening out.
Her brain is doing something extraordinary. It's not healing, but it's rewiring, it's improvising, and it's doing so in a way that no one on this planet can explain. Neurologists are fascinated by this kind of brain activity, but they're not surprised. It happens all the time, in different ways. We don't understand how -- our best neuroscientists are little more than village shamans in some ways -- but we know that occasionally the brain finds a way.
Sometimes the human brain is unbelievably fragile and breaks in ways that we can't fix or even comprehend. And then sometimes it just kicks this hard world right in the ass.
The teachers and therapists and diagnosticians at Schuyler's school are smart people. They have years of experience and they have methodologies that have proven effective with a huge number of students. (The Plano Independent School District is massive, with over 54,000 students.) They've had a lot of success stories, and as a result, they have a great deal of well-deserved belief in their systems and their procedures and their data. Their faith is in themselves, and perhaps that's justified.
We have faith in Schuyler. We have faith that her weird and wonderful mind is going to continue surprising us all, in ways that can't be predicted but might be harnessed from time to time, if we open ourselves up to the possibility and commit ourselves to educating HER, this one unique kid, in ways that we've never tried before. We're putting together some things to try over the summer to attempt to do just that.
What if we're wrong about her? What if our optimism is, as one person put it, a product of the rose-colored glasses we're both wearing? (For those of you who have tried to paint this in terms of the befuddled father who just can't handle the truth, you should know that Julie and I are 100% on the same page regarding Schuyler and her abilities.) What if they're right? Then that's the way it goes. Our love for Schuyler certainly won't change, and if she's destined to live with me for the rest of her life, well, that probably sucks for her, but selfishly, I'll be just fine with it. Schuyler is Schuyler, and my affection for her is not dependent on some benchmark she has to reach. Well, of course not.
Having said that, I want to be clear. We believe Schuyler's diagnostician is wrong about her. And we think the rest of her team was wrong, disappointingly and shamefully so, to stand behind this report and to lower their expectations for Schuyler just because they have yet to reach her THEIR way. But I'm glad that Schuyler is in a school that will be ready and more than able to change course and educate her once she begins to confound their scientific, pedagogical, data-crammed predictions.
I'm not sure I have faith in their system, not like I once did. I certainly don't believe in it as strongly as they do. But I understand history, and I have just an inkling of an understanding of Schuyler, so that's where my faith lies. She's done it before. I believe she'll do it again. That's my faith.
I continue to be a selfish, selfish person. I REALLY needed you to write this entry. THANK YOU for it and I believe in Schuyler, too. It is exactly as you have said, she has ALWAYS surpassed their expectations, broken the mold, whatever. She will continue to do so. Your family never ceases to amaze and inspire me.
ReplyDeleteI think you were just a little too hard on neuroscientists - shamans is a bit far back to place them in my opinion. What I know about the brain is that it changes in ways that are not easily explained - seemingly agreeing with you, Rob.
ReplyDeleteBut while difficult to explain, there are those whose understanding is far beyond me and most of the commenters here. You might want to view a series aired on our local PBS station and available online - the Charlie Rose Series on the Brain. The 8th episode just aired.
Suggesting this for viewing does not mean I endorse everything said on the program, but generally I thought most of the episodes gave valuable information in an understandable way. I reviewed the first 7 episodes on my blog with only one getting a 'thumbs-down' from me.
Barbara
"Shaman" was the word that one of the top neurologists who has seen Schuyler used to describe himself and his colleagues. I think you'll find that neuroscientists are the first ones to admit how little we know about the brain.
ReplyDeleteI had my daughter AR yesterday at her new school. They were going through the objectives in her statement and the head was asking why on earth was a particular one in there. It was about giving her the right to take exams in the future. The head was saying that was for mainstream children that can get 5A to C grades. Your daughter won't be able to do that due to her language difficulties. She might be able to do 1 or 2. Now that pissed me off!! In her last special school she was the ONLY child in her year (out of 11) that was able to sit her SATs and she got 3's for maths and english (below average) and a 4 for science which is average. She recently scored 65% top of the class in her chemistry paper!!
ReplyDeleteSo sod the teachers.... Both our GIRLS can do it and they will because they know we believe in them!!
Col
I can only speak from personal experience with what has happened with our son. I was told he would never be able to write above 3rd grade level because of his handicap and not understand anything higher than 6th grade level because his language would never develop above that. Well, shame on them and kudos for me for never giving up. He is now in college. Yes, it's hard but he is doing it! Don't give up! You know what your child is capable of and she knows what you expect from her.
ReplyDeleteHE'S BAAAAAAAACK!! Trust your gut.
ReplyDeleteThat's exactly what I was hoping to hear you say.
ReplyDeleteYou sound more hopeful and positive in this post. Yeah!! I tried to comment on the last post and couldn't seem to type anything that didn't sound trite or cliche. Glad to read you are standing firm and following your gut. Damn the torpedos!! Keep the faith!! Go, Schuyler!! :-)
ReplyDeleteCarrie
I see that exact amazing ability to surprise, everyday when I see my daughter! Especially kid's brains...way freaky...how they "rewire" themselves! I am a FIRM beliver that our children should not be "boxed" in by anyone, especially the people in charge of their education! They don't know what Schuyler is going to be able to do when she is 20 and quoting facts about other people like her is like trying on someone else's clothes. It just doesn't fit right! Last year, we had some private testing on Faith done and we had a wonderful doctor who did them. She gave us the most hope of any professional we ever met...The biggest thing you have to worry about is UNDERESTIMATING her! She is going to surprise you!
ReplyDeleteRob and Julie,
ReplyDeleteIQ is just a number. You both know that. IT really doesn't matter in life. How many of us know our IQs? Schools want to have it so they can justify lower expectations and simplify placement. It is a tool they find useful. But it has very little use for the parents or the students. Are the majority of students above average? No, not even in Plano. The truth is many very capable adults are walking around with double digit IQs and doing just fine thank-you.
Now about mainstreaming. This matters more in high school as Schuyler will need Carnegie credits to graduate. Modified special ed classes will not count toward those credits. In the school I teach at students with IQs above the MOID range (55) are allowed to take general ed classes. But they have to pass the class and the grades are not modified. There is extra help provided by a co-teacher but in the end many of the students with IQs under 70 do not pass these classes. You hit on the dirty little secret that self contained or resource special classes in reading and math do not prepare a student to pass these general ed courses. Catching up is rare but possible. I taught students with CP in a self contained elementary school class for many years. Most were functionally non verbal and all used one form of AAC devices or another. Most were behind academically when they left my class and few graduated from high school with a general diploma. The new system of inclusion with a co-teacher has not yet produced better results. But your daughter is an individual. She has surpassed your expectations and will surpass the expectations of her teachers. If her IQ is never 100 or even 70 who cares. It is what she does with the abilities she has that matters. Teacher Rhea
As a parent of a 4 yr old with mild lissencephaly I can agree that it's harsh for us to hear "your daughter is likely to always be delayed" but we also hear from our Neurologist at Children's in Boston that there is alot they don't know about the brain. Her brain smooth in the back - not all over - but everyone who's seen her MRI expects her to be more profoundly impaired yet she talks, walks, runs awkwardly and plays a mean game of Zingo.
ReplyDeleteKeep at it with Schuyler - it can only do good in the long run. We have a preschooler but as she gets into elementary school and beyond my husband and I plan to focus on working with our daughter's team
to figure out how she learns and work from whatever strengths we can find - the deficits are all too obvious - but underneath it all there are some things she does that her brain wired itself to do, we want to keep those pathways burning up.
Love reading your blog, have been reading it since she was 18 months old. Thanks for your candor especially when the "truth" such as it is, is hard to accept.
I'm so happy to read this post. That IEP meeting was a tough blow, and would make anyone stumble, but it looks like you've dusted yourself off and will move forward again with renewed faith and optimism and not that you need my approval, but I think you're absolutely right. Megan's neurologist, nearing retirement, and one of the most esteemed in our area, told us they still just don't understand much about the brain, and couldn't really give us a prognosis for Megan. I think he's a very wise man. I think anyone that tries to say what Schuyler's brain is going to be doing in the future is a fool. It seems to me she's learning all the time and will continue to do so. I know Megan's progress has not been linear. It seems that some months her brain gets some of that wiring going suddenly and she makes huge leaps. You keep pushing, working, and advocating, and when Schuyler's an adult, you will have peace knowing you did your best to help her. And you're helping a lot of other parents and kids along the way too.
ReplyDeleteHi Rob,
ReplyDeleteI have read your blog for awhile now, and find it to be an excellent account of your journey with your "broken" daughter.
I have never commented here before, but as a health care professional (physical therapist) and doctoral student in neuroscience (emphasis on stroke recovery), I thought that I could validate some of what you said.
You are absolutely correct when you say that professionals can make mistakes. I graduated from PT school in 2002. At that time we were taught that people recovering from a stroke are as good as they can be by 6-12 months. In other words, they are done recovering. I know this is basically what physicians were taught as well.
Now, numerous studies have shown this to be untrue. In our professional training we are encouraged to help people accept and accommodate their limitations and not to offer false hope.
Just last month, one of my patients who had a large devastating stroke was speaking to a group of medical students. He has aphasia, and did most of the talking, but his wife helped facilitate at times. She said, "There is no such thing as false hope."
"Hope is not a guarantee."
I thought that was so powerful at the time and I think that applies to your current situation with Schulyer.
I guess my take home message is this. Professionals can be wrong, not maliciously, but based on experience and education. We try to offer "realistic" expectations and try to let you know what we think your child's strengths and limitations are. One of our goals is to help patients and family's accept the "reality" of the situation. However, our idea of reality is based on our experiences and Schulyer is certainly one of very few with her condition, so the basis for our medical predictions is on people who are not like her at all.
Hopefully, based on your daughter's experiences, the book can literally be re-written and expectations will be higher and children will do better because "that is what experience has taught us."
In the future, parents will be told their child can do more, can improve and we will help them in every way we can.
Sorry for the length of this comment, but I believe that you are on not only the right track, but the ONLY track for Schulyer.
Keep up the good work.
Bravo. Amen and someone give me a Hallelujah! That's the man I read about - faith in his daughter, knowing his daughter and believing above all else, in his daughter. She will astound us all. She already has. And she is so very lucky to have you as her father.
ReplyDeleteI'm glad to hear that you're more positive in this post.
ReplyDeleteForgive me for asking what may be an obvious question, but I'm not a parent, much less the parent of a child with educational-system challenges.
ReplyDeleteBut. Would it be possible to make some kind of arrangement whereby Schuyler's progress is assessed anew more often? Annually, or every "semester"? So if you do go with one system for a year, you'll have a chance to check in and everyone realize "yeah, actually this way isn't working as well as we thought after all", or in a few years you can catch if/when Schuyler suddenly shoots ahead ("...huh, looks like she's now testing at a new level").
That strikes me as something that would take away the fear that she'd get stuck in one system in perpetuity with everyone assuming that there's no reason to see whether she may be doing better later on.
Again, if this is the sort of thing that happens every year anyway, then never mind.
I wish I could be her teacher. Not because I think her teachers are bad but because I love being around children who constantly amaze me and transform my world view.
ReplyDeleteI've come to think that with each iep meeting, a small part of me dies. I hate the process, for so many reasons. One of which is that everything positive I say about my son seems to get filtered through this 'veil of parental denial.' As if spending the entire 6 yrs of his life with him doesn't lend me any expertise (nevermind the fact I have a PhD in a related field)--go figure. Whenever the penetrating doubt of professionals begins to eat away at my confidence in my own perceptions, this is what I ultimately ask myself: which side would I rather err on? No one has a crystal ball. IQ scores are far from perfect predictors, particularly when it comes to children like yours and mine. So with perfect prediction not an option, would I rather err on the side of thinking too much was possible or too little? I know my answer, and if you'll forgive my presumption, I'm guessing I know yours. Don't let anyone make you feel any shame in wearing those rose-colored glasses.
ReplyDeleteOK, let's say we set high expectations and teach at the top of her ability (which we should do for all kids) and yet Schuyler still has challenges in learning and reasoning capacities- so what? She's an amazing cool kid and look at what she's accomplished already not just in her own life- but those of others (look at her Dad- what would he be without Schuyler?!). I think we get too hung up on IQs and the idea of "mental disability"- that old stigma is blinding us from seeing the truth. This girl is rocking this world, end of story.
ReplyDeleteThis post and the past are contradictory because, well, how couldn't they be? Some say there are three sides to every story, and I am glad you have the courage to embrace both doubt and faith and the understanding that Schulyer, like the concept of God (forgive me for the comparison here) is beyond what our own feeble brains can fully comprehend. God is the best we can do given our capacities and I have a hunch that any human concept of God isn't even almost close to the vastness and magnificence of what really is. But it's all we've got because we CAN'T know more, and we're not designed to, really. Knowing it all isn't the answer. I see the roots of your agnosticism here and I think (not that you asked) that it is okay to be just a little bit unsure about Schulyer, too. No one can truly know another 100% and no test or tool (both human or computerized) can tell us all there is to know. I believe in the vast possibilities of God, though I don't know for sure. I believe in the vast possibilities Schulyer holds within her, as well, but I don't know for sure. No one does. No one does because no one can. And I think the responses here are natural--your faith has always been not with God or teachers or yourself as a father, but with Schulyer and that was that. And I know it still is there--but like emjaybee posted on your "Uninvited" post, "a faith that cannot withstand even the mention of disbelief is a pretty damn weak faith."
ReplyDeleteYou've proven with this week's posts that your faith in Schulyer is actually stronger, not weaker, by allowing space for the possibility of doubt. Though a bit sad, it is honest and real, and you are nothing if not those things--and I, at least, thank you for that.
xoxo
P.S. Language isn't always enough to full express or capture the things that are most important, so I hope the words I wrote are signposts which point what I was trying to say, if not exactly right.
Thank you for this post and the last, on a very tough topic to discuss (and even to think about). I am a new reader of your blog, and have been given much "food for thought"!
ReplyDeleteDon't - do. not. - give up. I personally know a kid diagnosed with a brain tumor at two, and they removed a third of her brain. A lobotomy-plus. Many dire predictions, roughly the size and shape of the ones made about Schuyler (intellectually speaking) were made.
ReplyDeleteShannon's about to graduate college with a double major in early childhood education and sociology, and she plays the piano.
You get right back on that horse.
Great post. I think Schuyler has more amazement to show everyone....there is something more to come.
ReplyDeleteI was very happy to read this post. I was struggling to find something meaningful to say about your last post, but I just seemed to be saying, "me too", with everything I wrote.
ReplyDeleteAs you say, Schuyler has exceeded all expectations. Why wouldn't she continue to do so in the future?
When my daughter was diagnosed with her monster, the neurologist said flat out to us that we know so little about the brain that nothing can truly be predicted.
He also said, "Your daughter has never read any of these books or papers saying she can't do this or that. She can write her own book about who she is and what she can do."
Don't let Schuyler read those assessments! 8) She is who she is and she will continue to be an amazing person.
R.
does schuyler do any activities outside of school-like dance or soccer or instrumental (thinking percussion here)? Karate? Gymnastics? maybe kids away from school will be on a more equal level....
ReplyDeleteWe're exploring the possibility of her joining a soccer league, like a regular one with neurotypical classmates. Her coach seems to think she'd do well in the right circumstances.
ReplyDeleteBeware the soft bigotry of low expectations. Whether the experts are right or not in this assessment really should not matter to the issue of Least Restrictive Environment. The LRE question should be--okay, so we have some evals but what support does Schuyler need in order to succeed in the LRE? It should NOT be--here's an assessment that says Schuyler should be in the SPED class. (Plano ISD might be great, but Texas schools are in a backwards march on inclusion b/c inclusion requires resources. If Plano ISD has Feldman, Rogers or Walsh Anderson on the legal payroll--and they likely do--they're being trained in anti-inclusion strategies.) Those who advise an independent eval are right on. And always, at every meeting, every parent should be sure to remind the ARD committee that every decision should help to prepare the child "for future education, employment and independent living," the goals established by the US Congress under the IDEA.
ReplyDeleteOh, what an exciting post. Now I'm cheering for you! Go, Rummel-Hudsons, go!
ReplyDelete(continued from previous post) As for a certain Baptist mentioned in one of your previous blogs...shame on her. I truly believe that God created me and all things. I don't believe that He causes bad things to happen. I don't believe that anyone should wear blinders and be oblivious to others beliefs. A solid faith requires that your faith be based on facts that you yourself have learned. The same way that your faith in your daughter is based on the actual facts of her life, the same way my belief in God exists. Please, don't judge all "Christians" by the experiences you've had with a few. I've survived two brutal marriages and as a result could easily say that all men are abusive, cowardly jerks. Yet, I KNOW this would be untrue. I've had people in a public setting make obvious loud comments about "some parents" not being able to control their misbehaving child (when there was actually a medical reason for the seeming misbehavior) but I know that not all people thought that. Life is so much easier, more beautiful, and just overall better when at the times your faith takes a beating you can look to that higher power that is and breathe a sigh of relief that He will make all things out for good. ;-)
ReplyDeleteI've been on vacation for a couple of weeks and am trying to catch up! Several times I've had people ask me what the hardest thing is about raising a child with special needs. I'm never quite sure that "hard" is the right word. Yet, for me I think there is one definite thing that defines the life of the parent of a unique child and that is everyone else's expectations.
ReplyDeleteHow is it that, as a parent, we can be trucking along just fine, firm in our faith then suddenly someone seemingly more knowledgeable then ourselves speaks up and shatters our perception? Yet, with love and faith comes the ability to pick up the shattered pieces and put them back together, with a deeper faith and renewed conviction.
I've not been fortunate to live in a location where the public school system is able to effectively educate children with special needs. I live in an area where children in elementary school are bullied and made fun of by "typical" students as the teachers look the other way. I've had the early intervention pre-school tell me that my son couldn't enter the program because he wasn't cognitively delayed. When I stated that it was a blended class and requested that he be entered as a "typical" student,I was told this couldn't be done because he has "special needs". My eldest son got in trouble at school and was disciplined for not staying in line when he stopped to help another student up after he fell going up the steps. The student had Cerebral Palsy and my eldest was told that the student needed to "learn how to take care of himself" and didn't need help getting up. I've had doctors prescribe sedatives to my son when he was 15 months old while at the same time telling me he was to young to start speech therapy or other means of therapy that I felt would help him.
Each time someone who is supposed to be educated, informed and more knowledgeable then me has placed my son in a box, my faith has faltered. What if they are right? What if they know more? What if what if what if. Yet, each time I realize that a higher being created my son and placed in him his own special strengths and beauty. I pick up the pieces of my temporarily shattered faith and put it back together, this time with a stronger glue then before.
My child will succeed. Maybe not in the "normal" ways, but his strengths will be encouraged and supported and he'll blossom. He'll know that different is not bad. He'll know that no matter how many times I screw things up, I'll never leave him and never quit loving him. Just as the love you have for your daughter will prevail and carry her through many many things in life. She'll move through life continuing to do more then the educated others say she can do, simply because you have faith in her and are open to a higher belief system then most.
Amen.
ReplyDeleteYOU know your child best. tests only evaluate her on one day and maybe she didn't like the evaluator or they didn't understand her. Keep fighting for her, and push her to do as MUCH as she can.
ReplyDeleteRob - I want you to look into this program called Learning Rx. I believe there is a center in Plano. It is very expensive, but they specialize in brain training - which is a type of physical therapy for the brain which sounds amazingly similar to the type of brain adaptation you refer to in this entry. They work with autistic kids, kids with processing disorders, and even some head injury cases. It couldn't hurt for you to check it out.
ReplyDeleteI know you posted this some time ago and I have not read all the comments. Perhaps someone has already brought up what I'd like to bring up but here goes: I'm sure you have studied a bit about Deaf people and their history in the U.S. with education. If so, you know that many, who were forced into oral only programs, were saddled with never getting past a 6th grade level, solely because by the time their educator's "gave up" and allowed these kids to learn a language they could actually use to communicate with (sign language), they had lost years and years of language. As you have said, your kid went five years without being able to communicate. That must have an impact. She is behind in large part as a result, I'm sure.
ReplyDeleteI read your book and afterward read a lot about your girl on this blog, etc. Clearly, she is not mentally retarded. The intelligence bursting out of her face is significant. Her sense of style, her personality, her expressiveness, refute that label. These diagnosticians and educators are shackled by the only things they know. They have certain parameters within which they make assessments. That's okay but you cannot rely on those parameters to determine what will happen with Schuyler. They likely have not found the system that works for her, to assist her in her educational process. But education is happening nevertheless. Your job is obviously to continue searching for better ways to reach her and help her learn faster and to process what she learns more effectively. In the meantime, she will continue to advance despite the lack of an educational system geared perfectly for her.
Slowly, perhaps, by the measurements we have today, but she still must be advancing. Please do not let the limitations of the current educational system defeat you or pigeon-hole your kid. You know what you're up against. That's all. Continue to work to find ways around that. Everyday there are thousands of people who surpass their educators' and doctors' expectations. Your kid already has. There's no reason why she cannot continue to do so.