text:
Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
May 27, 2010
Truth can be a monster, too
I'm a father, and not just a father, but the father of a mysterious and broken little girl whom no one in the world seems to understand completely. Not her teachers, not her therapists or diagnosticians, and not her extended family. There are times that I think maybe I understand her, but of course that's not true. I try my best, but I am crippled by my love for her, which sounds like a wonderful thing but in reality is wrapped in fear and bias.
I've written in the past about our resistance to the desire of the school's educational diagnostician to administer a new cognition measurement test to Schuyler, with the aim of a more accurate IQ number that, in her opinion, would likely place Schuyler in the range associated with mental retardation. When it came up again early this semester, we didn't grant permission to administer the test that would measure cognitive impairment (and would include the IQ number and possible MR label), but we went ahead and gave permission to give the rest of the evaluation, which would measure academic skills and performance.
We got the report this week, and it was pretty negative. The diagnostician prides herself of her straight talk, which I appreciate, mostly. She believes Schuyler is retarded, to put it bluntly, and we do not. It's a difference of opinion, although I don't think of it like one of those Coke-or-Pepsi, Mac-or-PC things where we can just agree to disagree. This matters. But still, she's a professional and her opinion counts.
The report doesn't say this, of course, since we refused the cognitive evaluation. But it presents a pretty bleak picture of Schuyler's abilities. And it caused us to begin asking questions about Schuyler's present and her future.
At her annual IEP meeting today, those questions were answered.
So here's the part where I confess that I've been lying to you about something. I haven't been doing it intentionally; until today, I thought it was true myself. But here it is, our new truth.
Schuyler isn't really being mainstreamed. Not to the extent that we believed, anyway. Schuyler goes to a regular fourth grade classroom for science and history and special little projects, and of course she goes to art and music in regular classes. But the bulk of her academic work, the core subjects like reading and writing and math, these take place in her special education class, and the work she's doing there is not age appropriate. Her progress is steady, but not enough to bring her out of special education, and according to her team, she is unlikely to ever catch up.
When I expressed our goal of having Schuyler primarily mainstreamed by the time she leaves middle school, we were told flat out by the diagnostician, with the silent agreement of the rest of the team, that Schuyler is very unlikely to reach that point.
How do we feel? I can't speak for Julie, but for myself, I feel like I've been living a big joke. I feel like in my mind, Schuyler was a serious student with a real shot at living and succeeding in the neurotypical world, but to her teachers and her team, our goals were unrealistic. At one point the diagnostician said that she understood our need to be unwavering advocates and to believe that anything was possible, before she pointed out that it was her job to present the facts as she determined them. And in her eyes, Schuyler isn't just delayed. She has a significant cognitive impairment, and that's that.
We know Schuyler is delayed, yes; remember that she didn't have any real expressive language until the age of five. Her brain and her world developed internally, without language or much real guidance, and I've always believed that the key to reaching her was to understand her world and how she moves through it. But perhaps I'm alone in that belief. We have always understood that she was behind, but it wasn't until today that we really faced the possibility that she might not have the capacity to ever catch up.
I've stood in front of audiences of approving therapists and parents who wanted to believe me almost as much as I wanted to believe myself, and I've told them that thanks to her AAC technology, her good school program, her unstoppable will and her broken but clever little brain, Schuyler was spending the better part of her day in a regular, age-appropriate class, doing the same work as her fellow fourth graders and well on her way to graduation and success.
But as I found out today, that wasn't true. Today I found out that Schuyler may be uniquely broken, but she's got a struggle and a future ahead of her that's identical to thousands of other kids. She's in a school that will continue to teach her and care for her better than most, but one that has a realistic, data-supported expectation for her abilities that we cannot share.
I love my little girl, more than I ever thought possible, and I believe in her with everything I am. But today, I faced the fact that my love for her might just be blinding me. For all my fancy book events and all my inspirational speeches and all my "gee, what a dad!" accolades, in the end I might be just like any other parent of a disabled child who has convinced themselves that the future is going to be easier, not harder, than the past and the present. I've looked at families with kids who sit solidly within that MR diagnosis and I've counted myself fortunate that my daughter has future options unavailable to them, but that might not really be true after all. It's entirely possible that I've stupidly and arrogantly pitied my own people.
My love for Schuyler has made me a believer and an unwavering advocate, but it might also be making me into a fool. And that's hard to face.
So how do I feel? I'm tired. It's exhausting, trying to build a fantasy world in which you child's disability isn't going to hold her back forever. It's a full-time job, convincing myself that everything's going to work out somehow and that one day she'll tell people "Why, there was a time when my teachers thought I was retarded, and look at me now! My parents believed in me, and they were right. I'd like to dedicate this Pulitzer to them."
And it requires a constant, unblinking effort to convince myself of the very very pretty lie that my little girl is going to be okay.
79 comments:
- Tiffany said...
This must have been such a hard entry for you to write, Rob. I've read you since the Darn Tootin' days, before Schuyler was born, and I've always had faith in one unwavering fact: you - all of you - WILL be okay. Because, there are many definitions of "okay". And you will find the "okay" that fits for you, and your family, and your circumstances. Keep the faith (no irony intended with respect to your recent Baptist Debacle) - because faith, too, has more than one definition. So, keep the faith that you ARE a good dad, that Schuyler IS as determined to make life what she wants it to be, that Julie IS a fantastic mom, that you all make a GREAT team together, and most especially, "Everything will be okay in the end. If it's not okay, it's not the end."
- Jadesymb said...
- eliza said...
- Julie Pippert said...
Rob. What a challenging situation, an unbelievably tough thought process. What did you used to say? Get on a plane to France and end up in Norway? You managed, in this post, to convey so well how this feels to you, that I think I can say fairly that I really understand.
I don't know how I'd feel about a label, a limit, a shifted reality.
I expect anything I say will end up ridiculously trite. So I'll just go cliched and say hang in there. From over here, I see that you and she have accomplished so much. - 6:08 PM
Rob, don't be brainwashed by these people. The hope and dreams you have had all along are what has kept you and everyone else who reads your blog faith that we shall overcome these disabilities and live our lives to the fullest.
- Sarah Margaret said...
Tiffany says it well; we had a bit of good news today - our rather delayed Eighteen will only have to repeat one semester of one class next year, which means she might actually graduate from high school. And the psychiatrist who evaluated her today said, "just in case she doesn't qualify for continued disability, I'm putting her in for the vocational program"...As we tell her every time we argue that studying would indeed bring up her twenties and thirties, we are *terrified* for her future, but we come from a world of master's degrees and able-bodied craftsmanship, which will not be her world. She will have to find that herself, with people more qualified than us to show her.
Schuyler is NOT MR!!! Don't let anybody convince you otherwise or suggest that she might be. She might be not fully mainstreamed and might be behind her normal peers but she has a disability that they don't have so comparing her progress to theirs is not fair to begin with. Like not all normal kids take AP classes but it doesn't mean that other kids who don't take AP classes are MR though, technically they are behind their peers who do take AP and Honor classes.
Most standard IQ exams are designed for children who do not possess any language or motor impairments. If someone has an overt specific language impairment, standard IQ testing will produce misleading estimates of intellectual functioning because of the verbal loading of instructions and the verbal nature of the tasks required.
Schuyler will be OK.It might take her a longer time to learn smth compared to the normal kids but she will get there in her own time. She is a bright little girl and she has a bright future ahead of her. Don't let anybody tell you otherwise!!! - 6:23 PM
Rob: Please continue to allow yourself to grieve..and write--if I may say so, I believe there are many of us who are not thinking "what a dad".... to many of us following a spooky, windy path in the dark like you are--you say the things we are not prolific enough to say out loud or on paper. We connect with you--we laugh and cry at your words because we live them too....we wait for your next installation to find out what happens to Schuyler so we can be prepared for the best and the worst...and that blurry place in between. Your experience is an authentic one, even if you believe you had yourself and the rest of us duped. You did not. This is not a wash...this is a schema shift. So grieve hard in your revelation from today--grief is different than loss of hope--grief is the door to a different reality and Schuyler is no different that she was yesterday--your blinding love is why she will always be successful.
- farmwifetwo said...
My Dh is like you... I suspect that's why he sends me to the appts and he stays away. Home he's just "Dad", the appts show a reality he's not 100% able to face.
We, start a spec ed class in Gr 4 next year. YES, he can stay in his homeschool, yes he can be integrated... it is his Mother that has pushed him out. Dh did not agree but until he attends the appts he has no say. Then he saw the room in Apr, talked to the Teacher and decided it would be 'ok'.
IQ testing is done as part of the psychometry pkg. Ours says our son is dev btwn age 2 and 3... the rest says on average our 8.5yr old is closer to 5.5 or 6. If he speaks, if his comprehension catches up... like older bro - who was non-verbal PDD at 2.5 and now mild NLD at 10.5 - he may become "normal"... or for us that means "independant"... I'm not anticipating miracles.
My meetings tend to be short b/c as I told the psychometrist "you haven't told me anything I didn't know but gave me the papers to demand something different". I after school.... or homeschool during the summers etc... Then you see the truth in what they do or do not understand.
She may catch up.... she may not. As long as she is learning.... as long as she is safe, happy and being taught... You can go no where but forward... one day at a time. - 6:41 PM
- WriterGrrl said...
Oh, Rob. At our IEP a few weeks ago, I said that I made a comment about hoping D. would one day be in general education, and everyone around the table got very interested in their fingernails. I totally feel you. I'm also right there with the Pulitzer speech. Right there.
- Julia O'C said...
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- Leightongirl said...
I think they're the ones who are stupid. The so-called cognitive impairments are so wrapped up the disability, how could they ever be separated? I for one have always envisioned your beautiful S. in a college classroom, along with everyone else.
My Dh is like you... I suspect that's why he sends me to the appts and he stays away. Home he's just "Dad", the appts show a reality he's not 100% able to face.
We, start a spec ed class in Gr 4 next year. YES, he can stay in his homeschool, yes he can be integrated... it is his Mother that has pushed him out. Dh did not agree but until he attends the appts he has no say.
Okay, I'm sorry, but is it just me or does this sound like the OPPOSITE of Rob? I'm sorry that your husband doesn't go to appointments, but that's not what Rob is saying at all, IMO. I doubt you're trying to be insulting, but jeez.
Rob, have you ever missed an appointment or a meeting about Schuyler in your life? - 7:36 PM
- Rob Rummel-Hudson said...
Rob, have you ever missed an appointment or a meeting about Schuyler in your life?
Thanks, Becca. As a matter of fact, no, I don't think I ever have. - 7:39 PM
- Robyn and Glenn said...
Schuyler doesn't have to be at grade level to be included. You can ask for her to be 100% in typical classes with whatever modifications she needs to be successful. In the typical classroom she will have age appropriate language models. Do what you think is best for her. Don't let anyone "expert" you out of your opinion. (This is coming from a special education teacher.)
- Alejandra said...
They're not even giving her a chance to catch up, with that assessment.
I wasn't expected to function normally, either. (Whether I do now is debatable, but hey.) I also didn't have parents with even 1/8 of the involvement you and Julie invest in Schuyler's life.
I'm still catching up. But I'm here, in the world, aware and on my journey in ways only I can be. Schuyler will find her way, with your help. And the professionals will always be bound by the things they think they know, and reluctant to accept what they aren't taught to expect, which you've already seen in spades. - 7:58 PM
- Melissa Luxmoore said...
Rob I have a little one with PMG too. Seriously, if I compare Schuyler with Ayla.....I can honestly tell you that Yes, Schuyler does have a handicap compared to the other kids. But she is most definitely NOT MR. She has a very bright future ahead of her.....she's just keeping it to herself for now.
Don't be hard on yourself. I,too, prefer to have my head firmly planted in the sand when it comes to my daughter. Hell, I like my sandy little world. - 8:09 PM
- Ange said...
There's a crossroads where you have to see all people with disabilities--including those with cognitive disabilities--as people with worth, people who are not broken. I am on that icy, foggy road in a trustworthy Subaru and sometimes slip back, crack a windsheild, get a flat tires, but I always kick into gear because if I don't believe that my children have a right to be part of this world, who will? My husband is a sports car in a tunnel revving forward trying to get ahead without getting any rock chips or dents. He goes doesn't see what I see or hear what hear. He hasn't reached the moment you have yet so he can't choose to overcome it. I don't think I am a fool, but a parent who believes in the worth of human beings of all abilities. I don't know what the future holds for my boys, but I choose to not define it by labels and hope with all of my life that they will have a place in this world because people start changing their views about cognitive disabilities. No regarding my hubby...I am not putting him down at all. We are different people adjusting differently...but I'm deeply in love with him and am so thankful that when I run out of gas he is right there to pick me up. I must say there are many days I love riding with him in that sports car, top down, hair in the wind, the boys giggling happily with us.
- Niksmom said...
There's a reason parents are entitled to ask for an independent educational evaluation. I would consider exercising that right.
The report is a reflection of one person's assessment using a specified set of paramaters designed for typially developing and verbally literate children. The data will *always* skew toward MR for children such as ours.
Doesn't mean it's always accurate.
How do they know what Schuyler is or is not capable of if they aren't giving her the access to the opportunities and the supports necesary to benefit from that access? No one can possibly predict what the future may hold for Schuyler. - 8:51 PM
- CharmingDriver said...
If it's true everybody plays the fool, I can't think of a better reason than your daughter.
I know fuck all except what you have been gracious enough to share about Schulyer so, clearly: grain of salt to everything I say. But I mean, honestly. She is on five year learning curve so deciding five years in she's reached maximum capacity seems a bit short sighted and mis-guided.
In other words, fuck those guys right in the eye. But I sure am sorry you and Julie are hurting. - 8:57 PM
- Joeymom said...
You know, you probably ought to have an independent eval of her, rather than just a school eval. With the communication disabilities that go with autism, administering an IQ test is extremely difficult, and it is important to use an appropriate tool in order to get an accurate measure; and there are lots of different assessment tools to choose from.
The idea of a school program is not just "any progress is appropriate" but the child must make "appropriate progress." She may need to the age of 21 to get the material most kids get by 18. The problem is if they are allowing her to fall farther and farther behind, because she is not progressing at an appropriate pace. Having a better (and independently assessed) idea of what an appropriate pace is for her may give you a better sense of what to advocate for, and what to plan for. - 9:02 PM
- Rob Rummel-Hudson said...
In other words, fuck those guys right in the eye.
That's the best thing I've heard all day. - 9:04 PM
- Adrienne said...
My little boy has entirely different disabilities than Schuyler's, but my feelings are similar to yours in many ways.
We knew from the time Carter was an infant that something was very different about him. By the time he entered school we knew he had motor and social delays, hypotonia just severe enough that it would never be safe for him to play most sports, and significant emotional issues.
When he had a full cognitive eval when we were developing his IEP, I wasn't scared. Carter is very verbal and I thought his intelligence would be somewhere in the average to above-average range like his siblings and his father and I. When the diagnostician threw the words "mild mental retardation" out on the table, I was stunned. I said, "That leaves him with NOTHING! Fine motor, gross motor, social, emotional, all his health issues, and now COGNITIVE problems, too?!?" It's the only meeting about Carter at which I have ever lost my cool.
For now, the grieving is going to have its way with you, but later? You will come to a new place in which you know that you will help Schuyler into a joyful, satisfying adulthood. It may or may not involve college, independent living, the writing of books, whatever, but it WILL be a wonderful life. - 9:10 PM
- Laura said...
I don't have any words of wisdom or experience to add. Just sending some love your way tonight, to you and Julie and your beautiful daughter. If all your. . . what were we once called. . . minions?. . . are a big Internet extended family, I guess tonight I'm the one who just flops down on the couch next to y'all and awkwardly bumps shoulders as a way to show affection and then turns on some sports. ~ Laura
- Catherine said...
I am going to a wedding this weekend and seeing a dear friend whose youngest child had Cruzon's disease. He was in special education and special mainstream for a good part of his life. Because he could not see well, breathe well, hear well, speak well and was very delayed in his mileposts, it did take him a long time to catch up. But catch up he did. His parents don't even know when it happened, but somehow he graduated a couple of years late with a regular real high school diploma. He is now in college. Not thing wrong with him cognitively.
The point is, how can these specialists tell who is delayed but will "catch up" to become a self supporting "normal" adult? How can you tell if a 10 year old who is testing at age 5, will not reach middle school capacity at age 18 or 20 and five years later be a young adult? We do not stop learning. Even permanently developmentally delayed kids can keep learning and improving. From what I have seen, there are kids who are just a set number of years behind and do catch up.
There are parents whose kids did not improve too. A young lady who was dxed as learning disabled for years, finally was categorized as permanently delayed. She did need a special school which she finally got for high school, and what a world of difference it made for her. She truly flew. But she is not capable of doing high school level work. About 8th grade is well she is stuck academically and conginitively.
Also, the many autistic kids that really are mentally delayed and will always be often have parents who feel that this the cognitive part is there but is just taking time to develop.
If you can afford it, do look for a good school for kids who are delayed. This mainstreaming does not do most kids any favors, from what I have seen. I have always been at my kids' schools a lot, and those mainstreamed kids are not truly mainstreamed. They would have been better off in a special school that could focus on their skills and weaknesses instead of going through the motions of normalcy.
Hugs to Schuyler. There will be a place for her in this world where she will be making a difference regardless of her what her cognitive abilities will be. - 10:30 PM
- Squid said...
Thank you for your honesty on matters so wrenching. I hope you have friends who listen to you talk about Schuyler and school as long as you need to, then help you process and problem-solve.
Our son is on a different path, but we've had professionals attempt to install similar barriers. It's taken me years to learn to seek out the teachers and specialists who are interested in learning what's best for him, and avoid those who assume they already know, or want to show us how well they accommodate his limitations.
We are in the process of transferring my son to a different school for just this reason - next year's classroom was to be led by a wonderful teacher who is only interested in doing things her way. No thanks.
I've been told I'm over-protective. I don't care. My son is vulnerable, he needs vigilant advocacy. I don't want him coddled, but I do want him surrounded by educators who believe in him, who want him to succeed.
May you find those educators for your daughter, too. - 11:29 PM
- lizvelrene said...
IQ tests are dubious enough for people *without* the communicative difficulties Schuyler has. I have never entirely understood exactly what it is that it purports to measure aside from the testees ability to take the test. It is not predictive of anybody's future. It does not measure talent, determination, or hard work. Our secondary education, similarly, really teaches students how to be students and not so much that is good and useful in life. Schuyler will have a harder time fitting into the expected box for a typical american student. But what can you really tell about the abilities, cognitive or otherwise, of a fourth-grader? And what does that really mean about what they will be as adults? I guess I'm trying to say, don't panic. Even if Schuyler is delayed, that doesn't mean she is not growing or progressing. She is progressing at her own pace, and nobody can tell you now where she will reach.
Keep on fighting for your daughter. - 11:39 PM
- Elizabeth said...
I don't know, Rob -- it smells like bullshit to me and after being in "the system" for more than fifteen years, I have a very, very sharp nose.
Get an independent evaluation if that helps your "scientific, evidence-based" mind -- and trust your instincts, your original instincts. I just can't believe that you and your wife would be so wrong, so in denial that this one bureaucrat and her team would cause such a radical about-face.
I think there's a problem, too, between advocating for your daughter and believing in her, imagining the best for her and expecting that everyone will as well. As S gets older, you will probably have to work even harder to find her champions. - 11:41 PM
- Christopher said...
I wasn't in the IEP meeting and I haven't seen the tests but I am a teacher. Sometimes we have this unerring ability to always think we are right.
We aren't. The fact I am a teacher proves it.
I had a lot of learning problems growing up and all the tests and experts washed their hands of me. So did my mom but I never stopped pushing. Sometimes the tests are right. Sometimes they are wrong. You can only be the best parent you can be and keep pushing and believing in your daughter.
Whatever the final results are her life will be fuller because you and Julie were there. It will be better and richer and more than it ever would have been without you.
Today it gets to smack you around but tomorrow she is Supergirl and you have planets to help her save. - 12:33 AM
- Karen said...
I come from a family of teachers. My parents are teachers. My siblings are teachers. My husband is a teacher. My in-laws are teachers. I can say without a doubt that I know teachers. I can also say without a doubt that teachers are often wrong about kids. Not just occasionally wrong or usually right, but wrong a shocking amount of the time.
Looking at a child's future is a lot like looking at the weather. You notice trends. You keep track of what usually happens when certain conditions combine. But you are only taking a best guess based on how things turned out in a similar situation. And that's the key to all this. With Schuyler, There Is No Similar Situation on which they can base their judgements.
Imagine it. "In the past, we've observed that girls who are non-vocal due to malformations in the speech and language areas of her brain tend to... um... well... OK. So we haven't ever observed anything like that. But we can say definitively that we know how this one will progress. We can say we know what her future holds."
Teachers base their future expectations on their previous experiences. And they have no previous experiences with kids like Schuyler.
Teachers base their judgement of what a student is capable of learning based on how long it took that student to learn previous materials. Only how can they judge how long it took Schuyler to learn to read (since they don't know when she began reading things) or to add (since they don't know when she began adding things), etc. It's like saying a runner isn't fast because he crossed the finish line in tenth place. That only works if he started in the same place and time as the other racers.
Teachers predict a child's future based on how well a child learns new material. Only with Schuyler's communications difficulties, can they be certain that all her questions are being answered, all her misunderstandings are being cleared up, and that she's being given the tools she needs to learn. You've blogged in the past that Schuyler goes through periods where she doesn't like to use her BBOW. She's self concious to a degree, and it takes her longer to ask a question, to make a comment, to communicate. So if she's in class and she has a question, how likely is she to just decide it'll take too long to type it all out. How likely is it that the teacher moves on to new material before Schuyler is ready just because that's easiest for everyone. If that happens even once a week, then her odds of getting a good understanding drop off tremendously. It doesn't mean she can't learn. It just means she's not getting the opportunity to learn that most other kids are getting. But on paper, it'll look like she's got a disability.
You may not know your daughter. But neither do they. She may be mentally retarded. She may be brilliant and go on to cure cancer. But right now she is mostly a mystery and anyone who says otherwise is lying or deluded. They are not just comparing apples and oranges. They are comparing apples and a planet seen through the Hubble telescope. And they're trying to tell you that they know what will happen to that planet based on their experiences with apples. - 1:01 AM
- Rebekah said...
Ricky keeps testing borderline MR, and we're never sure whether it's because of his cognitive difficulties -- like he's not "getting" some of the questions, if that makes sense? -- or if he really is MR. I've pushed for him to be in mainstream classes and he always needs tons of accommodations to participate. He goes to high school next year (eek!) and I'm terrified about how it's going to be for him. I have always expected that he'd catch up or something but I too am coming to realize that it's not going to happen. After all, he only has four years left of school and he reads at a barely third grade level (and reluctantly at that), and can barely add and subtract let alone do fractions and algebra and all of that high school stuff. I'm scared for him. I used to be hopeful about his future but now I'm just not sure.
Anyway... I guess what I'm trying to say is that I can see where you're coming from here. - 1:05 AM
- renee altson said...
we are struggling with this as our daughter turns 13 this year. We are coming to the realization that she will always need us, and will probably always live with us.
I've held onto that dream, too. That she would somehow be fixed...that they were wrong... that she was differently different.
It is to conjur up "go Rob, don't listen to them!" or "You can change things! She's not MR!" hopes, because none of us want to accept that news, either.
I don't know the future. I don't know what either of our daughters are capable of. But I am learning that it is important that I begin to acknowledge that it might end up being worse than I think. To somehow sit with this grief and bitterness, anger and frustration- and realize it is a part of me, as well as entirely possible.
I want you to know that I hear you. I resonate with this entry. I hope that they're wrong... but at the same time, it's a struggled conversation you'll likely have over and over. I wish you the ability to be kind to yourself, and to honour who you are and how you love (& have loved) your family, regardless.
No matter what - you haven't done anything wrong. You are, in fact, one of the brightest lights in Schulyer's world. - 1:08 AM
- BeautifulWreck said...
I have been reading your blog and previous online journal for as long as I can remember. The last time I commented on this subject, I mentioned homeschooling which got dissed. However it is what you experienced, what your daughter is experiencing with the school system right now that leads many of us to educate our children at home, especially those that have special needs. The public education system is misleading and doesn't allow these kids to reach their full potential because frankly it costs too much time, money and resources. These people are not invested enough in our children simply put. I admire that you continue to fight the good fight and again, I am not saying this is something you should do, but it doesn't hurt to explore all the options - even ones you said you would never do.
I once sat in a neurologists office in which the jackass, I mean good doctor told me my son was mentally retarded and that he would most likely never function in a normal classroom. He got part of it right. My son cannot function in a normal classroom which is fine by me because he is on grade level in every subject but math (he is a full year behind). My husband says there is a reason the world has calculators.
Like others have said, you have been and I am sure will continue to be an excellent advocate for your daughter. I believe that where there is a will, there is a way. - 1:40 AM
- mermaids said...
hugs to all of you. when you have a child with a disability, it is so difficult to balance hope and reality. yes, there are children who defy the odds and do amazing things. that just might be schuyler. you can't give up that hope. however, i do understand that one must also stay firmly rooted in reality. it is a difficult dance, but if anyone can do it, you can
- farmwifetwo said...
My husband is like Rob in that he believes/wishes that one day it'll all be "fine". He's realistic, scared and a wonderful Father. Sitting in those meetings and being told differently, having your expectations and dreams smashed... is heartbreaking.
Which is why he doesn't attend them.
Testing shows the ugly.... Ignoring it won't make it go away. You need to use it to make positive choices... not worry about the negative ones.
I recommend you work with her at home... and see for yourself where she is or is not and push her forward. Without doing that, my eldest would still be MR. - 7:16 AM
- Karen said...
I'm so sorry. It's hard coming face to face with things we don't like. But Schuyler WILL be okay. Cognition or IQ have nothing to do with how successful and happy someone is, that's a product of what's inside them. And what's inside Schuyler are her parents belief and faith in her that she can do anything she wants.
- Rob Rummel-Hudson said...
I recommend you work with her at home... and see for yourself where she is or is not and push her forward. Without doing that, my eldest would still be MR.
Do you really think we DON'T work with her at home? - 7:30 AM
- Terri said...
I also have a daughter with severe language delays (in her case, due to brain damage at birth, 4.5 years in a Russian orphanage that didn't exactly have state-of-the-art early-intervention services, and then having to start all over in a new language when we adopted her and brought her to the U.S.). I've also gotten those evaluations that make me amazed that she can even get out of bed in the morning and put one foot in front of the other, so ghastly is their assessment of her ability. Years ago, one of those professionals who prides herself on straight talk told me that if we were very lucky and dreamed big, my daughter might be able to sweep the floor at McDonald's when she grew up. When I insisted on mainstreaming her after second grade, I was told it would destroy her.
Well, it didn't destroy her. Nobody's going to make an inspirational movie about her academic triumph, but she got along. She's graduating high school next month, and going on to community college to get an AA in early childhood education. She wants to be a teacher's aide, and has worked in that capacity in summer jobs and an internship this year. We just got an evaluation to use in requesting accommodations and modifications from the college ... and it's the same old stuff, as it has been over the years, huge delays and borderline IQ and no reason to believe this kid could be where she is. Evaluations are only a snapshot of what the kid can do that day with that evaluator. They are not truth.
And even if Schuyler's evaluation is a full and complete depiction of her abilities (personally, I have my doubts about how accurately those tests can assess kids with atypical language deficits), those scores in no way rule her out for inclusion. You do not have to be "caught up" to be mainstreamed. The whole point of inclusion is to put kids with different abilities into the mainstream classroom. The work is then adjusted to accommodate each student's level. Peggy A. Hammeken has some great books about differentiated instruction that explain how that can be done. It is absolutely something schools can do. They may not want to, but by law they have to provide the least restrictive environment, and if you feel that's a mainstream classroom for Schuyler, don't be deterred. It's not an unrealistic expectation. - 7:31 AM
- farmwifetwo said...
Ran out of time, bus came.
You want to prove she isn't MR, then you have to do it... seriously.
My eldest was non-verbal mild PDD at 2.5yrs old. We were told to write him off... litterally by the Dev Ped. At the end of Gr 5 he's "normal" with some social quirks that are catching up fast and a few LD's that are dealt with easily by the school.
Gr 3's EQAO and psychometry testing (Sept Gr 4) showed mild MR. April's report card was A's and B's except C's in English.... ALL HIS GRADES.... just like the rest of them.
Why?? B/c starting mid Gr 3 I bought the Gr 3 Classical Ed curriculum (Saxon Math) for Math and started teaching.
When the psych testing came back with a flag for short term visual/oral recall problems, I called the SLP and asked for most testing and it flagged it 100%. What did that mean... that meant English had to be taught with a twist. That meant a fusion (keyboard/computer) went in and typing was taught quickly so now his thoughts get on the page before they are lost.
Every day he reads - Gr 4 we back tracked to Gr 2 to 3 books, to work on the visualize/recall while you read difficulties b/c to him it was just words on a page and he forgot what the story was about as soon as he read it - Gr 5 he's reading age appropriate.
We still do Math, we still do read a paragraph answer question books. You can buy these at walmart or any bookstore or online. We still read. This summer we're going to start dictation to work on that short term oral recall problem.
The school's cannot and will not do it.
If you want to prove them differently like I did... You have to do it yourself.
The testing didn't lie. That is were she is at today....
I'm doing the same with little boy... although I doubt he'll ever catch up... but there are many who start to speak as teenagers... and dammit... I'm doing my damdest to be one of those.
Use the testing... demand the services... quit being like my Dh and thinking that being Daddy is enough... Daddy is always going to be her hero... But Daddy now how has to wage war on the Monster... In our house... Mommy does it so Daddy doesn't have to... But each house is different but someone needs to... Or, to be blunt... she'll keep falling behind. - 7:35 AM
- Rob Rummel-Hudson said...
Use the testing... demand the services... quit being like my Dh and thinking that being Daddy is enough... Daddy is always going to be her hero... But Daddy now how has to wage war on the Monster... In our house... Mommy does it so Daddy doesn't have to... But each house is different but someone needs to... Or, to be blunt... she'll keep falling behind.
How am I being like your husband? At what point have I ever said "Gee, this stuff is HARD, so I think I'll just ignore the problem and not get involved?"
I may have gotten it wrong from time to time, like every parent does, but goddammit, I have been there at every step of the process, I have worked HARD for Schuyler and I have educated myself about her condition and the technological and educational options for her. Having hopes for her that her school believes are unreasonable isn't the same thing as somehow being unable to face reality, and I resent your repeated implication that I'm that cliche of a father, the one who can't deal with the hard stuff so I just hide at home while the overworked saintly mom does everything.
Here's a newsflash. Not only am I NOT that father, but in my experience, most fathers aren't that father, either. I'm sorry if you husband is, but stop extrapolating.
Anyway. - 8:10 AM
- Ruby said...
She will be ok.But "ok" for her just might not be the "ok" you expected or hoped for. It's a reality that parents of children like ours eventually face. I'm so sorry. Reality can be very cruel.
- Alison said...
Dear Rob,
I've just found your blog in the last week or so. To preface my comment, I confess that I don't have kids yet, and am thoroughly unqualified to say anything at all.
That being said, it occurred to me while reading your post this morning that it might help you reconcile your view of Schuyler's development with the professional evaluation if you were able to spend a day or two at school with her. If they allow you to observe a routine day, it might at least give you a complete picture of what Schuyler's day is like. I suspect that your evaluation of Schuyler's abilities and the school's are not necessarily mutually exclusive, but that there are probably underlying truths in each side's assessments and goals for Schuyler.
If nothing else, it might alleviate the awful dissonance you seem to be feeling now that stems from your school's strikingly disparate evaluation of your daughter. Maybe it would help you to ground yourself again to be reassured that you and the school are in fact seeing the same child.
Anyway, feel free to disregard my unsolicited and ill-informed suggestion! And thank you for your beautifully written blog. I have two weeks of vacation coming up and your book is first on the list. - 8:51 AM
- Carol Askew said...
Rob, I think you were right to decline the IQ testing. The school district tested Megan at age 5 - we thought it was required. They found her to be solidly MR, and placed her accordingly, with no academic challenges. We took Megan to a pediatric developmentmental psychologist - the most experienced we could find for kids like Megan. She tested her over two weeks, and Megan tested in the borderline range - a full 25 points above the school testing. And the most important thing that private psych said? This testing is still most likely not accurate. It was and still is impossible to accurately test Megan as she is non-verbal, has limited motor skills, and has spent most of her 9 years unable to communicate anything other than her most basic needs and wants. Now she has her communication device and she is a whiz on it. And this year at age 9 she has demonstrated that she can read. Pretty well. In 1st grade, the school district told me there was no reason to even try to teach her to read because she wasn't able to, and I was deluding myself. My point? You keep reaching for the stars, and ignore anyone that tries to tell you they know what Schuyhler is capable of (or not). You'll have a pretty good idea of what she'll accomplish as an adult...when she's an adult. :-)
- Tina said...
I wanted to add my two cents into this, as a parent of a high-functioning autistic child. One thing I've learned for sure in the past few years is that those "official" reports always, *always* make the situation look worse than what I see in reality. The first time I saw a report on my child, I couldn't believe they were describing my sweet, good-natured yet quirky boy. I, too, cannot even repeat in writing the report that I buried far away where I pray he never sees it for himself.
This may not be the case for you, but I've learned there's more behind the assessment than getting at the true abilities of your child. Remember – the worse the assessment, the more funding and programs are offered to your child. As much as I'd love to see in writing what a bright future my son has (and I know he does), if that's what was in the report, he might not get the real help he needs. It's that double-edged sword you have written about in the past.
Finally, they didn't assess Schuyler's will to achieve, and that cannot be discounted. It was just an academic thing comparing her to the average child her age. They also didn't assess the support she gets from her amazing loving parents and caregivers. Schuyler has proven these assessments wrong time and time again, and she will continue to do so as long as you keep believing in her. - 11:04 AM
- Nightfall said...
That's a harsh kind of reality to face, Rob, but I think it's only part of the bigger reality, the one in which your little girl is indeed going to be okay, in ways nobody's even imagined yet.
When Schuyler was diagnosed, or at any time that she's been "evaluated" by one of these teams or tests, if you had suggested that at age ten she would help pilot an aircraft, what do you think they would have said to that?
Whatever she has accomplished so far, whatever she accomplishes in the future, it will be because you do not see fit to place limitations on your belief in her and what she can do. I firmly believe she will continue to surprise everyone.
And thanks again for bringing the iPad communication application to our attention, so my stepson can have a voice even without a tongue. - 11:46 AM
- Penny said...
Hi Rob,
All I can say is that I understand. I have a daughter who is now 13 and people told me exactly what they are telling you, when my gal was 5 and 6 years old. I actually believed them for a short while. Then I rallied people around me who believed my child could, got myself an Independent Educational Evaluation from a person who believed in inclusion, self-worth of a child and that child's ability to learn, handed it to them across the table and asked when the hell we were gong to develop the IEP that actually included my daughter with her peers - and I mean included.
Excuse me for saying this - but the evaluator is full of shit. She can believe it to her heart's content, but YOU are the CEO of Schuyler. You know what you know. Hell, I don't believe that Schuyler is MR and I don't know her, but I've read enough about her that I believe the gal can and does learn. Efficiently at times. And she has the capacity to learn and learn and learn.
What's the big focus on the dx of MR anyway? So they can shuttle her off and tell you they were right all along? Hell with that. Are they trying to prove themselves right?
I tell ya - get Schuyler an IEE and get her back in that 4th grade classroom, with appropriate modifications, supports and adaptations. Develop a strong IEP that focuses on her strengths. Tell them that Schuyler's LRE is with her peers and that's the law. Damn the MR and their testing. She does not have to earn the right to be included. She will learn, she will learn, she will learn, that's what should have come out of the evaluator's mouth. The hope that she will, she can and we will help her get there. I don't believe for one minute that this evaluator is right. I believe in Schuyler and I believe in you as her father. - 1:37 PM
Good lord, everyone's got advice for you, don't they?
So I've read your blog since before y'all had Schuyler, and I just wanted to say: I'm sorry about the news, and I'm sad about it, too.
I hope that the wieners with their wiener report are not just a little bit wrong, but spectacularly, massively wrong. And that she writes them letters someday to tell them so. - 2:22 PM
- marydell said...
I remember years ago when experts told you that Schuyler didn't have the mental capacity to use a fully-featured AAC device.
They were full of shit, remember?
I also remember when she was diagnosed with PDD-NOS, and you and Julie just didn't feel that was the right diagnosis.
You did not, however, recall that when you looked at her MRI you said "nuh-uh! That's a normal brain!"
I think your gut has been right on about Schuyler for her entire life. I don't think you should discount it until you've had some other people look at her--people who come at it from a different angle from the school folks, whoever that may be. - 3:57 PM
My ASD son had to go through the Medicaid waiver process 2 years ago. This is when MR hit me in the face. He was actually right on the border of MR/not MR (the personal interview did him in). A hard pill to swallow for sure.
While watching a television show yesterday re: teens who light themselves on fire and other jackass-related stunts, my son said, "Geez, that's dumb." I sat quietly, shook my head and thought, "who's MR?" Some days, I'm grateful I don't have typical worries with my atypical kid. - 5:26 PM
Rob, please don't let the results of one test (meant for neurotypical and physiotypical children) interpreted by one person (a tool of the system that wants to label your child so they can put her in her proper place on the shelf) shake your faith.
So many people have been wrong in the past about Schuyler and her abilities--this diagnostician is just one more in a long, long line.
"My love for Schuyler has made me a believer and an unwavering advocate, but it might also be making me into a fool."
No. That is NOT TRUE. How could believing in your daughter ever be wrong? She needs you to keep that rubber sword raised and ready, to fight that monster with her. Please don't let those stupid numbers make you think the battle is a losing one.
Steady, man. You have been, are, and will continue to be Schuyler's rock.
Hugs, Sue - 6:25 PM
you know what?
Your kid is awesome. And even though I don't experience her in person, I see the pictures-read the stories- and -she's smart, creative, determined (translated as stubborn in some circles)
My question is: does her team hold the same level of expectation as you do? If they don't, and Schuyler senses that- her tests may be reflecting THAT- not her real ability...body language, gestures, facial expression are a big deal to a kid- and in Schuyler's case- maybe more important than verbal cues?? I don't know-but I would say trust your gut instinct on this...at home you expect more of her 'normal' 4th grader stuff-so you see it?
I don't see 'retarded' in your child--Screw the 'trained professional' sideways. - 6:41 PM
- Catherine said...
Rob, how can these professionals in the field tell if a child who is delayed is going to always be delayed, or if s/he will catch up someday? Is it because of Schuyler's medical diagnosis? We all know that children with Down Sydrome are highly unlikely to "catch up" and become self sufficient, independent adults. But what about other kids who do not have a condition that can be clearly diagnosed? I have seen prediction made like the one Schuyler got, that have been wrong.
I've been following your blog since I read your book about your daughter last year. You are a wonderful writer and father.
I am the parent of a 20 year old daughter whom we adopted from Romania at the age of 15 months. Your recent post about facing Schuyler's future with a possible MR diagnosis brought back so many memories that I felt I had to write to you.
Our daughter Daniela has struggled her entire life with multiple disabilities and diagnoses. Her early years were very challenging. While her challenges are not completely the same as your daughter's, I remember well the first school meeting when the professionals let us know that Daniela had the MR diagnosis (now in Virginia switched to ID for intellectual disability). We were in denial for a long time and grieving for her future for an even longer time. I was frankly terrified of what she would be like as an adult, how she would cope, how WE would cope. I even wrote a book about the early struggles which was published in 1999 (and also a number of magazine articles). Writing was a cathartic experience as I'm sure it is also for you.
I just wanted to write and let you know - first: things are so different now for young adults with disabilities than they used to be. There are so many opportunities now for them that didn't exist even 10 years ago. Second, and more importantly, we no longer are in denial nor do we grieve about all the things Daniela will never accomplish. The diagnosis is still there, but Daniela is so much more than any diagnosis. We decided to treat her as normally as we treated her big sister (who has a master's degree). We never viewed her as different. We came to realize that her diagnosis didn't change who she was. We traveled and exposed her to many different experiences. She never was and is not ashamed of who she is. She is a wonderful unique young woman just like Schuyler. They both have a great deal to offer the world. They are both survivors with charming personalities who will lead fulfilling lives.
Daniela is now in the process of preparing to attend a post-secondary program for students with intellectual disabilities. There are many new programs opening up at colleges and universities all over the US. She and I recently started our own blog about her journey to become an independent adult. In 2 short months, it has been read by people from 25 states and 8 countries. I hope you read it and find some encouragement about the Schuyler's future. It may be a bit difficult now to see beyond the worries. I never thought we would be in the place we are now, excited and hopeful for what lies ahead for Daniela. The professionals in her life who have known her since the early days are amazed at what she is doing ( and what many students with ID her age are now capable of).
I've never met your daughter, but reading about her and watching her on video, I see that same spark of spunky enthusiasm about life that we saw in in Daniela at the same age. She is fortunate to have dedicated parents who will open up the world to her. I think she will have a fabulous life.
All the best,
Christina Goldstone
Daniela's blog is: danielasjourney.blogspot.com - 7:49 PM
- mo pie said...
Well, I can't top "fuck those guys right in the eye" but still, I'm sorry you're dealing with this. Schuyler is still Schuyler. And she's really really good at proving people wrong.
- Melissa Luxmoore said...
Hi Rob
I was reading a blog today that is tied in with my daughter's treatment. As I was reading it, I kept relating 'parts' of it to this blog post. Here is the link, if you're interested http://blyum.typepad.com/on_abr_and_beyond/2010/05/intelligence-vs-literacy.html
I certainly don't think this relates directly to you or Schuyler but there are parts of this post where I found that I could fit Schuyler and your education 'expert' in there.
Don't give up. Just because she thinks differently doesn't mean she's not intelligent. We all just have to help our kids find their own way.....whatever that may be. - 9:51 PM
- Melissa Luxmoore said...
Oh and for the record....I'm with Penny! We have all seen enough of Schuyler to see that that girl is NOT MR. She's learning new stuff everyday! Have you taught her how to give the bird yet? She might be needing that one.
Without ever having met Schuyler it may sound foolish to say this, but she has a spark of intelligence that can not be denied. She may have a different way of learning, or a pace that doesn't fit into the norm, but she is learning and growing every day and will continue to do so. I've been reading your blog for a long time. I've read your book and I have a huge respect for you and Julie and the way you fight for your daughter. I'm sorry if this is something you've answered in the past and I've missed but I just have to ask, have you ever considered homeschooling or unschooling Schuyler? I know that wouldn't come close to "solving the problem" of her development, but I honestly believe, and know (hope) you do as well, that she will find her place in the world in the way that works for her. She may not fit in to one of the more acceptable categories of the public education system, but that doesn't change her.
I'm sorry, the "label" just feels wrong. - 10:59 PM
Hi there. I do evaluations for a living and have read this blog for a long time. I can't really say with full confidence where your daughter's IQ lies, but I can say this----
I once tested a kid who for his whole life was coming out MR. He was articulate, interesting, funny, insightful- you name it.
If you looked at the tests and his results, it would be no question. If you looked at the ACTUAL CHILD, it would be easy to surmise how smart he actually was.
In his case, he had global learning disabilities. I got in severe, horrible fights with the IEP team and other psychologists over him because despite the test results, he really wasn't retarded.
Their responses were "the tests don't lie". On one level, true, but it discounts the whole child. Plus, what I saw right in front of my face.
You HAVE to ignore these results. It is really important to do so. I've had too many experiences where the results don't parallel the children's lives (especially in cases similar to yours where frankly they are not designed to capture true IQ in the atypical population).
Throw this one to the side as much as you can. Really. - 7:07 AM
- Rob Rummel-Hudson said...
I'm sorry if this is something you've answered in the past and I've missed but I just have to ask, have you ever considered homeschooling or unschooling Schuyler?
I know this answer isn't going to make some people happy, but we've never considered homeschooling Schuyler, for the same reason I don't do my own dental work or fix my own car. We're not qualified to teach Schuyler what she needs to know, and I'm sorry to say it, but I don't think most people are qualified to teach THEIR kids, either. That's just my opinion, take it for what it's worth. - 7:22 AM
- read2781 said...
I'm so sorry to hear about this latest turn of events. I haven't been there as I don't have children, but I've been in a similar situation when I was at a rehabilitation center for the blind in 2004. I was required to take an IQ test for admittance into a vocational program. I don't recall the final score, but what I do recall is the psychologists's frustration at my answer to one of my questions. He asked what you would do if you got lost in the forest. Keep in mind, this test was given on a Friday afternoon after a long week of classes so needless to say, I was beat. The first thing that came to mind was to grab your cell phone and call the National Forest Service for directions. OK, so that psychologist was blown away! He didn't know what to say or do after that. I don't remember if I had to give a different answer or even try and come up with something else. But getting lost in a forest, what a stupid IQ question!
When I returned home and met with my Voc Rehab counselor, he showed me the reports from this facility. The reports did not give me an accurate portrayal of me at all. Some examples:
1. Reading, math, and spelling are at a 6th grade level. (I had a Bachelor's degree at that time.)
2. Client can only work in an office doing routine tasks. (Now, I'm working at ABVI-Goodwill as an adaptive technology teacher where there are no routine tasks.)
3. Client seems depressed in group settings. (It was hard for me to participate in this support group because everyone else was older or had dog guides. I didn't have a dog guide at that time so couldn't relate to their experience.)
4. Cleint refuses to participate in recreation outings because she doesn't want to improve her independence skills. (I did not participate after the first outing because, at the time, I was on SSI, which was only about $400 a month. Each outing was quite expensive. I was budgetting appropriately so that I wouldn't run out of money at the end of the month.)
5. Client is maladjusted to her blindness because she doesn't want to participate in print class.
My explanation: Print class is a class where people with low vision have to sit in front of closed circuit TV's (CCTVs) and read nonstop for 45 minutes. I requested to learn Braille because I was getting headaches, eye fatigue, etc. having to try and read for 45 minutes. They refused my request because I am partially sighted. Hence, the person writing the report said I was maladjusted. I even had to see a psychologist to discuss this. He agreed that Braille was a better option. The staff ignored him and put me in counseling for 5 weeks at a cost of $75 to my state's VR program a session.
So, as you can see, even people with visual impairments and no cognitive disabilities are inaccurately depicted in reports.
Later, when I got home and received a follow up call from the facility, I told the guy that his tests were not normed for visually impaired individuals, thus were statistically invalid. He hung up on me and never called back.
So, I feel your pain. Don't give up! Give Schuyler a hug from Julia and me. - 7:42 AM
- read2781 said...
P. S. If you ever want to talk, feel free to e-mail me at firstname.lastname@example.com
My name is Emalie. I have been lurking for a long time, but when I saw your post, I was drawn to respond. I am living prof of the power of good advocacy, undying love and my parents unwavering belief in me. I am 24, have spastic quadriplegic CP, use a power chair and am blind in one eye. From the time I was born, these so-called "experts" told my parents to lower the bar for me, that I might never live independently, have a job, or go to college. I have done ALL of these things despite expectations.
I just want to encourage you not to buy this diagnostician's pronouncement wholesale. Continue raising the bar for Schulyer. Continue fighting for her, and teach her how to fight for herself. Who knows? Maybe you'll get that Pulitzer moment after all.
Emalie - 8:47 AM
I've my own diagnosis here:
FOS - Full of Shit -- Diagnosis for the whole meeting
TLTDTW - Too Lazy to do the work - diagnosis for the teachers
WWBO - Working with Blinders on - for the testers
and I could go on. And before you teachers/evaluators/testers, etc, jump all over me, I've BEEN a classroom teacher with mainstreamed kids in the class. I've utmost respect for those educators who are creative and can deal with the standardization requirements AND the specific needs of some tudents - they are the rare breed who should be honored.
Rob is the exact opposite, based on what I've read here, of "farm wife two"'s husband. Rob doesn't "believe/wish", he acts, researches, learns, studies, attends, intervenes, pushes, cajoles, pulls, and advocates based on his KNOWLEDGE of his child. Rob, you KNOW. You may not know HOW it's going to happen, this independence and competence in the world for Schuyler, but you KNOW it will. She needs you and Julie now, of course. The goal is that some day she does not.
You KNOW. They don't. - 10:01 AM
- BeautifulWreck said...
"we've never considered homeschooling Schuyler, for the same reason I don't do my own dental work or fix my own car. We're not qualified to teach Schuyler what she needs to know, and I'm sorry to say it, but I don't think most people are qualified to teach THEIR kids, either."
This is not something that I personally have ever believed nor my husband (a former teacher) but you would be surprised at how many parents who now homeschool their children had these same sentiments. My previous comment was essentially to say "explore all your options - even if it is something you never thought you could, should, or would have done before". One of the best homeschooling parents I know told me 8 years ago she would NEVER homeschool her kids and shared your sentiments. However she was forced to consider it when she realized that the public school system was essentially failing her child. And I am not talking about grades.
Research and studies have shown time and time again, especially children who have learning disabilities, often get better instruction and score higher on standardized testing that are homeschooled than those who are in more traditional school settings.
This research has also shown that there is little relationship between the level of education the parents have and how the child performs on testing. The biggest factors are the one on one instruction, flexibility, and the individualization. I believe it was last year that one study showed that children learned just as well if not better being instructed be a non-certified teacher than one that had gone to college for years to become one. AGAIN, this is not something I am saying you should do or that is best for your child. Educating at home is definitely not for everyone! However as parents, I think sometimes we have to explore all the options, even the ones that we thought we never would, if it can provide something better for our children. I often tell people I will never say never when it comes to returning my children to a traditional school, even though I hate the current model, because it may very well be best for my children. (and some of my kids have gone to public/private school) - 10:54 AM
- Samuel Sennott said...
We have always had good teachers and good teaching in the equation...but we never have had the tools we now have... And we do not know what tools and teaching methods those tools will make possible.
The future seems to be what we make it... Reality is helpful, but so are dreams/vision and revisions of those... - 11:47 AM
I have a few thoughts, and not all of them are entirely relevant.
1. None of us but you *knows* Schuyler. We can all give opinions on whether or not she's MR in any way, but we have no way of knowing anything about her but what you've told us. However, there is no harm in getting a second opinion. IQ tests are notoriously variable, and I have heard some real horror stories from adult disabled people about when they were kids and took IQ tests that tested them as WELL below their actual capabilities.
This is especially true with a more verbal-based IQ test with a child who, of course, is limited verbally. There are other tests that require less verbal agility.
(In one study I saw a few years ago, autistic children who tested as retarded on a test that required good language skills "magically" scored in the normal range on a test that didn't. Well, duh.)
2. Just to stir the pot, homeschooling doesn't require that you personally teach your child. It can mean hiring somebody to teach your child at home and some combination of activities, a homeschool co-op, and outside classes.
If you, after getting a second opinion and (if possible) observing her in class, think that she's being underserved and failed by her schooling, you might want to reconsider the option. It could still be the wrong one for your family, and there's nothing wrong with that. Nobody, but nobody can fault your care of and for your daughter! But there may be other options.
Uly - 1:16 PM
- Miz Kizzle said...
I appreciate your honesty. I really hate the Reader's Digest view of life where everything is black or white and the good people always overcome overwhelming odds to achieve spectacular success.
Real life isn't that simple.
Yes, I think from watching the videos that you've posted that S; is clever and she has a great deal of intelligence in her gaze and her lively attitude. She's clearly not a dull-eyed lump. However, her response to the simple school assignment asking her what she thinks the president needs to do a good job (forgive me if I don't remember the question exactly) was "a brain hat."
Hum. That's cute and edgy but if I were the teacher who gave the assignment I wouldn't feel great about that answer. I'd wonder how much S. really grasped about the president and his duties. She could just have easily have responded "a magic talking unicorn who can always detect truth from lies and that craps gold coins." J.K. Rowland made a fortune out of thinking like that but she wouldn't have wowed a fifth grade teacher with that answer.
I think the problem is whether S. will ever be able to assimilate information and give an age-appropriate response. That goes for the social arena as well as the academic.
It's still early days and maybe she'll do just fine. Just because a child doesn't grow up to win the Nobel Prize doesn't make her a loser. It would be nice if she is able to have friends and eventually do some sort of work that she enjoys.
At least you know the truth (or some version of same) and you've doffed the rose colored glasses. You're still a great dad. - 2:19 PM
- Rob Rummel-Hudson said...
Well, for one thing, Schuyler's not even in fifth grade NOW. and she was only in second grade when she said that. So while that may still have been naive for an eight year-old, I'm inclined to give her a few points beyond "cute and edgy".
And I'm not sure that having an excessively optimistic view of my kid's potential abilities is the same thing as wearing rose-colored glasses, but then, I guess that's the point of rose-colored glasses. You don't actually know that you've got them on while you're wearing them.
Anyway. - 3:42 PM
For what it's worth, I'm a SpEd teacher, and *I* still believe it.
- Rebekah said...
I homeschooled Ricky (CF, bipolar, Aspergers, SPD, etc.) for 6 months while the school district got their act together to find him a placement. It was hellish and I am sure that he not only didn't learn anything, but probably went backwards. I am a smart person and all, but I am not a teacher and I was so incredibly frustrated trying to teach him (with curriculum from the district). Our personalities clashed, he refused to work... It was nightmarish.
I have a lot of admiration for people who can homeschool, especially special needs kids, but I am NOT one of those people. I'm happy it works for them. It's not for me.
Just my $.50. - 2:04 AM
- miti38 said...
I love reading this blog and learning about the unique abilities Schuyler has. Her potential is unlimited, unmeasurable, and unknown, much like the potentials of all of us. If the hope for her future is that she will be a happy, engaged, member of society, she is already there, with limitless possibilities. All the tests do is show how she performs under those specific conditions. Nothing more, nothing less. Schuyler will continue to learn each day of her life, as do we all. When I look back (way back...) to school and high school and see what parts I know use, is it chemistry or calculus that come to mind? No. It's the mix of people, classes that I enjoyed, the teachers. MR or not MR, autistic or not autistic, XXXXdiagnosis or not, doesn't really matter. It is the limitless human potential that we all have that needs to be tapped. I run a day program for adults with from a wide range of functioning levels and last week watched a man, who is about 60 (and who came out of a state institution several years ago), who is non-verbal with not too many skills. He is now with a teacher who is amazing. She is in her 40's, has no degree, not a lotof experience and it doesn't matter. She connects with this man and sees his untapped potential. He was sitting with her, playing a game, completely engaged, looking at her, smiling, taking his turn. In short, enjoying his life and doing things that no-one ever dreamed. The future is wide open to him. Schuyler has a future without limits, and as long as there are high expectations for her, for which you will always advocate. She's the same beautiful, curious, unique girl as always.
- MothersVox said...
Hi Rob,
I'm new to your blog -- wandered here via the autismvox twitter feed -- and I want to say first, how sorry I am that you are going through this.
Second, I think it's hard to say what the truth is when it comes to our kids' trajectories. At my own dear girl's special ed school they thought she wouldn't read when she was in 3rd grade. Then she learned to read. Then they thought she wouldn't write. Now she keeps a diary. She's in 6th grade, and her reading and writing are not at 6th grade level, but she's constantly moving forward.
The truth of what our kids' potentials will be seems to be a shifting landscape. I think you've had a rough interaction -- reminds me of the time that a psychiatrist said our girl had "disordered thinking" -- code for psychosis (which, of course, she doesn't have).
Hang in there.
Truth might be the monster, but it seems to me that the real beast is the foreclosure of possibility that can feel monstrous and crushing.
The hardest thing for me has been to find a way to live with the unknowing. The ambiguity. The myriad possibilities that could go any number of ways.
I hope you won't let a test or some letters take away your vision for your girl.
I couldn't top CharmingDriver's advice. He or she is tops. - 3:49 PM
- dyskinesia said...
What good is a parent who doesn't believe in the best outcome for their child?
An educator at my Aspie son's school recently told me how wonderful my son was and that he could really handle himself in just about any social situation. She doesn't know his diagnosis, doesn't know what the hell she's talking about, and she's wrong -- but still, to have someone say that to me, I had a moment where I could dream that it was true, and it's the dream that keeps me going.
Reality is a traitorous bitch, so she's not on my list to hang out with. There are enough people in the world who are instantly against my son that I think it's more than called for that I be above average in my being FOR him.
Someone mentioned earlier that the worse the report reads, the more money and services for your child. Well, technically, no. Actually, it's the more money the SCHOOL gets. Whether they pass it on to your child is an entirely different issue. (My most recent IEP experience speaks to this: http://dyskinesia.wordpress.com/2008/10/09/violate-yourself-on-the-dotted-line/ )
We've had one decent moment of testing services, with a psychologist who listened to me about our son's history and took that into account, even though he'd made major strides since then. Every other testing moment has sucked Schweddy balls.
Your moments of grief at the realization of how Schuyler's days are actually being spent are appropriate (and how the hell DARE they not make this clear to you before?!? See, now that would have sent me over the table.), but don't think for a moment that Schuyler doesn't have the capacity to achieve what she wants or to be happy.
Success and happiness are not handed out by the Board of Education. They come from a place inside of ourselves - and usually because someone we loved believed in us. - 4:17 PM
- amylia said...
My heart goes out to you. Your candor is one of the things I hold most dear in you, even when it hurts, and I have faith that you will continue to hold to the candid truth as you see it without being blinded by love or hate or anything in between. You wear bifocals now and I think you must don them here, as well.
- WordyGirl said...
I'm in tears as I write this. I've been reading you for years and I've loved the Schuyler you've shared with us. I can't imagine how you feel right now.
I believe in all of you, and I send you love and grace and strength in the face of this new truth. - 12:48 PM
- Sherry C said...
Please do not listen to these professionals they do not know Schuyler potential she is not MR and can learn and is learning. I was a typical kid myslef but a slow learner my mom told me from a very young age I was going to university. I struggled with grade school was held back repeated grade 4 they wanted me to go a basic High school program which wouldn't qualify me for univeristy. My mom wouldn't have it. This is many many years ago I'm close to 40 but I have a honors degree from a very big university. I needed time is be ready on all levels I started doing well around say grade 10 I swear. I know I should not be admitting all this on the internet. She will do just fine she needs a little help now but she will get there. I have a special needs daughter myself, she learning to walk and will walk some day, she 5 years old she been eating one year and just starting drinking. Communication is hard she's non verbal I hope she will talk I'll never give up hope and I don't listen to anyone that doesn't believe in her like you do. Your such a great Dad.
In Canada they don't do those kinds of IQ test at least not yet Early intervention doesn't do it. Maybe in the future they will ask me I'll say no too like you do. Thanks for sharing your story so openly. - 10:25 PM
Rob, I'm going to have to chime in on this one, and I don't know if it will give any comfort, but...how much of ANYTHING in the school system - the math, the science, the limited reading allowed - really helped anyone do much of anything in life?
Did any of those standardized tests we took as kids mean anything? Plenty of people suck at school, and it doesn't mean anything about how intelligent they are. (The same could be said about IQ tests.) Take this with a grain of salt. So she might never mainstream. How much of what you did in "mainstream" public school classes did anything to advance your life/intellect/ability to handle things/character? - 1:11 PM
- woolywoman said...
why do they always feel the need to predict a child's future? I have always failed to see why that is important.
Don't get caught up in asserting that you're not like that woman's husband; that's not important. What's important is getting the best education possible for Schuyler and it doesn't seem like that can come from your school district.
They're already made up their minds about your daughter and to them she's more likely to be deciding whether to work at Wally Mart or Micky D's in a few years than she is to be pondering whether to accept a scholarship to MIT or to Harvard.
Schuyler is at a crucial point right now. If she gives up and collapses under the ostracism of the mean girls and the well meaning ignorance of her teachers she'll never reach her full potential.
I think you should set your sights on the best private school for children with learning disabilities that you can find. I know you don't have much money but perhaps S. could get a scholarship or you could beg, borrow or steal the tuition.
That's what I'd do if I were in your situation. S. is already losing her enthusiasm for school and once kids starts hating school it's very hard to rekindle a love of learning. - 8:37 AM


text:
Everything you need to know about Ghat Piparia: news, reviews, in-depth analysis, opinion and more
Everything you need to know about Ghat Piparia: news, reviews, in-depth analysis, opinion and more
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subset: commoncrawl


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Whats the story with Deangelo Hall?
My thinking is we really do need him with the lack of depth in the secondary. I think he earned a shot at 2013 with his performance over the final 7 games plus playoffs. Is the only hope for him returning to take a paycut?