This is Schuyler.
She is holding this week's spelling test. The words printed on the page are hers, from her device as she took the quiz.
Aside from a soccer ball sticker and a "Toadally Awesome!" stamp, it has no other markings on it.
That's because once again, she received a perfect score.
This is Schuyler. Two years ago, we were told that she was not intellectually capable of using this AAC device, the Big Box of Words; it was deemed, in the school district's final report before she actually acquired the device, to be "educationally unnecessary".
This is Schuyler. Two years ago, and also another two years before that, we were told that her future lay in general special education classes. We were informed that she was most likely suffering from some level of mental retardation and would likely remain in the care of special education until the day she was old enough to become Our Problem rather than Their Problem.
This is Schuyler. She is learning to use the BBoW on its highest setting, its most advanced vocabulary. She's already better at it than we are. She likes to show off on it and is already embracing the new vocabulary possibilities. Also, it has more dinosaurs.
There's a word that is forbidden in this home. It's a word that sounds very kind and nurturing, like something you might hear on Sesame Street, a word that spawned the Holland thing. We've been handed this word over and over again, and we reject it, completely. The word is a cage, plain and simple, and it's a cage we'd be putting Schuyler into if we embraced it.
ACCEPTANCE.
We don't accept a thing, because Schuyler doesn't. She never wants comfort or pity or acceptance. She has things to say, and she wants to say them. She wants to live a life as close as she can to the ones you and I live, not as a "special little champ" or "perfect just the way she is" or whatfucking ever, but as a punky, funny, smart and troublemaking little girl. She is Chaos in Chuck Taylors. And if you get in her way, she'll knock you over, because she's lost enough time and she knows it. She's flawed, more than some but not so much as others, and she knows that, too, and she doesn't shed a tear about it. While I worry and get sad, she rolls up her sleeves and gets to work.
Acceptance wouldn't be for her. It would be for us, for our fears of failure. I can't speak for any other parents out there, of children who are broken or exceptional or shy or hyperactive or just plain weird or whatever. But for myself, I was blessed from the very beginning because while I had a great deal of fear, Schuyler had none. She has none today.
And she has no use for Holland, either.
30 comments:
I can't express how proud I am of her.
Go Schuyler! I too am just so proud of her. I can only hope my little girl grows up to be just like her.
Schuyler rocks.
I've been reading you since before you got Schuyler's diagnosis, and I remember reading as you listed out various challenges to come, including the special ed stuff. I remember thinking that just didn't make any damn sense, even given just what we knew of your daughter through your writing.
So much for the experts.
Congratulations to Schuyler. Rob, you sound triumphant!
Rob, I know everyone is proud of Schuyler, and I am too. However, I'm pretty damned proud of you and Julie for being strong enough to give the middle finger to words like "acceptance."
As a new parent, I'm constantly being challenged about what I know is right for my son, and he doesn't have the hurdles that Schuyler has had to face. It's so hard. It must be so hard for you both, as well. I constantly look up to you both as an example of sticking to your guns and knowing what you do for your daughter is right.
Have you thought about sending a note to the other school with examples of what Schuyler has accomplished to show them that maybe they can help a child whose parents might not be a strong of fighters as you and Julie? Do you know what I mean? I'm having trouble finding the right words...
Maybe by seeing that Schuyler has surpassed...no, blown up the box they wanted to put her in, they might be able to open their minds to helping some other child as well?
Anyway, thanks for being so open and honest about your struggles because it gives us all strength.
Rock on!
As I get older I'm having a little trouble with spelling. Thank goodness for computers. I'm feeling so good about my 'investment' in Schuyler. I wish I felt that good about all the school taxes I pay to one of the school districts that failed her.
That's terrific! Congratulations, Schuyler!
Reading this post made me think of my parents and their refusal to accept. Of the time doctors suggested that when I left the hospital, they should place me in a group home and my parents essentially told them to go jump off a bridge. Of when the staff at that hospital suggested that I drop out of school and my parents backed me when I said I wouldn't. Of their ceaseless support of whatever I wanted to do with my life and most importantly, that they expected things of me. Expected me to go out there and participate, to do my very best. Insisting that I wasn't any bloody different from other kids and mere lack of ramps (etc.) wasn't going to stop me. That attitude helped me develop my own stubborness - the "I'll show the bastards" button - without which I wouldn't have accomplished half of the cool things that's happened in my life.
I'm sure you already know you're doing the right thing. All I can say is that based on my experience, you are exactly the perfect kind of parents for a kid with a disability. And that your blog gives me an insight into my parents' lives that I never had before. Thanks for that.
Schuyler,
You go girl!
Shannon :):)
We still have the Holland crap foisted on us by well-meaning people. I just remember the Pygmalion effect and expect that my son can make great progress no matter what anyone says, and if the preschool does not feel that way, he is not going...my son is four and a half. The school wanted to know if I want him in a group home when he is 18. This is a high functioning autistic boy who has made great leaps and bounds in just a year. They just continue to shock me. With parents like you, Schuyler cannot help but go far. She's an ultra cool kid.
I cant say how much i am grinning but its like <--------------------> this big lol.
well done Schuyler, you are one amazing little lady :)
STOP MAKING ME CRY.
it's really terrifying what this means for other parents who accept that their kids' schools have the expertise to know best... where are those kids now? who are they? who could they have been - where could they have been instead? :(
New triumphs every day.
Congratulations
Rock on, Schuyler!
I work with "special needs" children in a canadian school. I agree entirely with what you're saying and wish there were more parents like you! I wonder sometimes what these children i work with could have or could accomplish if their parents didn't just "accept" the fait handed to them by various drs/therapists/"professionals". My only hope is that my influence helps push them in the direction of their full potential.
Don't accept, challenge and overcome! :)
Right on Rob, Julie and Schuyler!!
I can't help but wonder how many children have suffered in silence in the past.
Being labeled as 'special' or 'different' or 'mentally retarded' immediately barred kids from 'the normal group'. I can't imagine being locked inside my head without the tools to express myself. Worse yet, being deemed unable or unworthy of communicating with others!
I was raised with a non-verbal (great) aunt, who was labeled (in the 1930s) as 'incapable of being taught'. I beg to differ; she taught me more that you could imagine.
Way to go, Schuyler. Go kick some tail!
I wish that Shuyler lived around here. My daughter (age 6), is somewhat of a follower by nature.
I can't think of a better example for her to look up to.
I can't decide who rocks more, you and Julie or Schuyler. But this I know for sure - you are the reason she is the success she is today. And I CAN'T WAIT for your book.
Hello- Please don't post this unless you think it would help someone in some way.
I just wanted to let you know that I ignored experts too. I was told severe apraxia, potential dwarfism/needs hormones, and mental retardation.
I just kept pushing her beyond the "possible" and now she is high IQ, tall, and speaks very well. I don't really trust diagnoses anymore. They're a baseline, not an absolute.
So where are the people that said she was retarded? Where are the people that said she couldn't use BBoW?
I can't help but be angry that people in positions such as theirs wouldn't at least try.
Can this be "pushed back" into the system that discouraged her? Sow seeds of enlightenment so that the next kid (who might not be so lucky as to have you) doesn't have the same problems?
I just keep thinking of Ms. Bitters. The System is the problem.
great post.
Great post! I'm not sure how I found my way here but I really needed to read that!
You sound like a great family! I look forward to reading more...
I think there are many different types of acceptance.. and your post and the replies have been discussing some different types of acceptance for his situation.
I think a person can accept their child for who they are.. and still push them to be more, to overcome.
I accept and love my son, who is also mute, for who he is today. But that doesn't mean I accept any fate that doctors give, or that the school gives.(A very different type of acceptance) I know that my feelings on this today won't be the same next year. A year ago I desperatley wanted all those opinions from doctors and therapists as to what will be his future.. in this moment I don't, because it doesn't matter. He will make his own future. And besides that they all have conflicting opinions.
But it was interesting to see your point of view on acceptance. I see it a bit differently at the moment. I do accept my son.. and I do think that he is perfect in today. This doesn't mean I pity him, or that I expect less of him, (I almost expect more of him). I don't believe to accept means to lay down.. I believe acceptance can be empowerment, support, absolute love.
And in my opinion, I have seen you have a type of accepting attitude towards your daughter. Every time you post. You don't write 'Oh, Schyuler, on this stinky device, I just can't stand this, I just wish she was normal blah blah blah.' You say nothing of this at all. You are proud of her, you tell us all.... see how amazing my daughter is! This is acceptance to me.
his = this
ACCEPTANCE is what those goobers in her original school need to have -- acceptance of their presumptive gooberness. And acceptance of the fact that they cannot limit a fantastic kid with determined parents. No one can. Ever.
Bearhugs from Tennessee.
Awesome job Schuyler!!
Hey Rob, how'd the media party go?
Mark G
This is Schuyler. She's amazing.
Rob and Julie, I'm hardly the first to say it, but I can't even tell you how proud I feel. For Schuyler, for you. I'm just so happy. As a teacher, I tried (though I'm sure I was far from perfect) not to allow a child's needs/"limitations"/whatever keep him/her in a box. And, really, when they have a cheering squad, it's incredible what kids can do.
Please pass along a HUGE congratulations and a high-5 to Miss Schuyler.
I'm curious if people know the story behind the Holland article and the woman who wrote it, Emily Perl Kingsley. It's not about acceptance of LIMITATIONS or pity for people with disabilities.
Like many other expectant parents at that time, they had taken childbirth and parenting classes and done a lot of reading and planning about how the birth of their child would go and how they would raise the new baby. (Their planned "trip to Italy").
When their son , Jason, was born, it was discovered that he had Down Syndrome. Now people often know that information way before the birth, but when Jason was born, it usually came as a big shock at the delivery.
The advice Jason's parents got was the same advice that most parents got in their situation...
"your child will not be normal" ....
"he'll never be able to learn anything".....
"don't even bring him home"....
"put him directly into an institution"....
"tell people the baby died and go on with your life."
They chose to accept their child and his diagnosis, but not his PROGNOSIS.
Mrs. Kingsley did volunteer work, speaking with other parents after the birth of their children with Down Syndrome. The Holland story was a way to convince these new parents that they could take their babies with Down Syndrome home, raise them and prove the doctors wrong. In order to do this, the parents would need to learn new languages (like speech therapy, OT, PT, augmentative communication, etc, etc, etc) and some didn't think they could do it. Those people who were expecting uneventful deliveries of healthy babies were in shock and mourning for what they expected and the last few parts of the story speak to those feelings.
So much for acceptance....
At the time Jason Kingsley was born, babies with Down Syndrome were generally put into institutions, not educated at all, and not welcome in 'regular schools'. I know people who had that happen in their family. One woman was told her younger brother had died at birth. When her parents were elderly, she found out her brother had lived his whole life in an institution in a closeby town. That was what was "recommended" in those days.
Jason Kingsley's parents did NOT accept the advice and prognosis they were given. They did NOT accept that he would not learn. Because of their advocacy, he was mainstreamed in regular classes and graduated high school with a full diploma (not a special education diploma) and also graduated post secondary education.
His mother was a writer on Sesame Street and Jason appeared on that show as a regular for many years from the time he was 18 months old. He wasn't highlighted as a child with Down Syndrome, he was just another child on the show. Sesame Street included kids (and adults) with CP, deafness, speaking with sign language, etc. in a very matter of fact way - they were just there, interacting with the characters in the same way as the other people (although some of them signed, some walked with crutches or used wheelchairs).
In 1994, as young adults, Jason Kingsley and his friend Mitchell Levitz wrote a best selling book about growing up with Down Syndrome. (Pretty good for 2 guys who were not supposed to be able to learn anything). Their book has recently been republished in a second edition:
http://www.thejewishweek.com/news/newscontent.php3?artid=13918
a few days ago I posted a little comment and mentioned how i work with children in schools. I noticed that i made a typo! It of course should read fate not fait! Goodness! LOL.. Schuyler could give me some lessons in spelling!
Great post. Thank you.
I saw your "Screw Holland" comment and at first was almost offended. However, I am proud to see a parent who does all he or she can to allow their child to reach their fullest potential, which unfortunately is often evaluated as a low potential.
I wrote the song "Welcome to Holland" based on the short essay by Emily Kingsley and I do know plenty of parents who have had to accept a different life due to their child's condition. However, I myself was diagnosed ADHDD as a child which was a bit excessive. I only wish my parents had stood up to the doctors and found my full potential earlier as you have done. Well done and all the best for you and yours.
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