(The perhaps inevitable result of scented markers and fine motor control issues...)
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First of all, I've posted my monthly essay on Hopeful Parents. Not a long or particularly profound one this time, but it's what was in my head and so there it is. Sometimes the thing I need to say is as simple as "Hey. Cut it out."
Schuyler has begun her summer with us, and we're walking a fine line between "Whee! Isn't summer FUN?" and "Holy crap, we've got a lot to do. Here's your homework for the rest of the day. Do it now, and maybe you can catch the last dying rays of the sun before it's time for bed."
The trick, I think (hope), is to keep it interesting, and so far I think we're doing okay. Schuyler's new fascination with email means that when I send her a random funny photo and ask her to reply with a story about it, she's into the task. In the same vein, math puzzles, ebooks, word games, all hold her attention when they are presented on her iPad, which is turning out to be an even better tool for her than we'd anticipated.
She comes with me to my office on days that I work, and she draws or writes or reads, or otherwise amuses herself on her iPad. (Thank you, streaming Netflix.) We talk a lot and we wander the campus when one or both of us needs some air. My new office is down on the bottom floor, in the back of a student computer lab that is closed during the summer, so it's quiet while she's here. I'm happy to have the company.
So this is our summer. Mostly I find myself focusing on being fun and engaging with her, and trying hard not to let on that in ways both large and small, and both fleeting and forever, I feel like my world is slowly falling apart around me.
Woo Hoo for Ipad! We just found a new app called Icomm, got it for 5 bucks and it's very cool! Faith is loving it! Hope you guys have a fun summer..
ReplyDeleteThat ipad is better than the reviews, at least for AT! I urge anyone to get their special Ed directors in an Apple store to play with them. I got my directorto buy 5 (small district) and she will be buying more in the fall. Intuitive use and unlimited apps, cheaper than a laptop! Way to go Schuyler, for using it well.
ReplyDeleteThat's really great that Schuyler is using e-mail. If you would like her to communicate with another person, I'd love to get to know her better. My e-mail is the one that is attached to the comment. I'd love to read her thoughts on whatever topics of conversation come up.
ReplyDeleteGlad to hear the Ipad is working so well...enjoy your summer!
ReplyDeleteSounds like an ideal summer. Sorry you have that falling-apart bit to include.
ReplyDeleteI have heard amazing things about the ipad for kids like Schuyler and my Peanut. I am glad to hear that she is loving hers! I would love to get one in the future.
ReplyDeleteI'm sorry that the world feels like it's falling apart. Sometimes it seems to do that. Luckily we've all gotten through those times before, and can get through them again.
Props for not making her do a million activities. I always felt so bad for the kids who didn't really get summer off.
ReplyDeleteHey - summer is a time for many kids and families to look back, to look ahead, to reassess, to feel like a family again, to slow down and just be. I do believe, that in the end, it will all be well. Welcome to summer.
ReplyDeleteThis is in response to your last several posts, and your last sentence " I feel like my world is slowly falling apart around me."
ReplyDeleteI keep thinking of all the deaf kids misdiagnosed as mentally retarded. And that if the deaf kids were institutionalized along with mentally retarded kids, well they grew to so exactly mimic everything the mentally retarded people did (of course, that's who they lived with, what they knew)that in a very real sense they had become mentally retarded as well. Afer a certain point, they could not be retrained.
I keep thinking about this story whenever I think about your struggles with the school system. And I'm sorry I'm so inarticulate, but I think I keep putting the two together, because I believe you are right on. Your instinct to keep exposing Schuyler to all the newest technology (IPAD!!) to "mainstream classroom education" and all that, is the ONLY way to make sure Schuyler will have a chance to learn every possible thing, her way.
Really, no one understands her mind (except you and Julie have the best clues)...And she's exceeded every single expectation so far, (again, except of course yours.)
To put it another way: Schuyler can be harmed by being mislabeled/miseducated below her capabilities. She can not be harmed if she is, lovelingly exposed to more....
I'm sorry if I just repeated "Dealing with your kids special ed needs 101." But from the outside, I don't think your world is falling apart. I think you are exhausted that you have to keep fighting this fight, especially now that you've found such wonderful and sympathetic teachers/specialists for Schuyler. And yet it feels like they've "given up on her." So now you've got no real support, no other visionaries working with you for the bright future you believe is possible for Schulyer.
You need hope again, and with that comes a new burst of energy and urge to fight....And I so wish I could give that to you, help you find it...
And since I feel exactly the same about god as you do...I can't say "I'm praying for you," except I am, with all my heart. --Stellasmom
I just finished (and enjoyed!) your book, and found your blog today. Having a son with PDD-NOS, I can relate to the feelings you have as a parent, helping your child as best as you can, and feeling, at times, that you are failing. It helps to know that we are not alone. Enjoy your child and take one day at a time.
ReplyDeleteHang in there, Rob. Every time things have gotten dark, Schuyler has exploded into silver light. I believe in all of you.
ReplyDelete"Every time things have gotten dark, Schuyler has exploded into silver light." Beautiful...I wish I had said that.
ReplyDeleteThis is my first visit to you blog, referred from "The Moon, worn as a shell," and Elizabeth. As the mother of a 30-year-old who has come much farther than our original neurologist ever foresaw, I am filled with recognition and compassion by your newest post. If it does not offend your beliefs, I would like to send whatever blessings I can access to you all.
ReplyDeleteYeah, I know. Me too.
ReplyDeleteI love how you put into words, both here and at Hopeful Parent, things I live with but can't express as eloquently.
ReplyDeleteI feel like my world falls apart a little more each day, especially when I realize that my daughter grows bigger, but not older.
Enjoy those summer moments and the silver lights. We're with you in spirit. I wish there was something more I could do for you, especially given how much your words do for me.
R.
thank spaghetti monster for technology (all hail Steve Jobs..). And thank spaghetti monster for parents who will never listen to Them.
ReplyDeleteoh, my heart breaks when I read that you feel your world is falling apart. Schuyler isn't any different from the girl she was before you talked to all her teachers. She's got the same drive you've noticed in her so many times before. Just keep pushing her onwards, as you've done so many times.
ReplyDeletethings will work out fine, somehow, I'm sure of it.
She's still the same wonderful girl she was the day before that conference with the school. That is really what I hate about these conferences. They are supposed to help the child, the family, not make them feel worse and envision the child and the situation with less hope.
ReplyDeleteEach day is just a little step forwards with some backward steps and standstills as well. Don't put her on a schedule as to when she needs to master what. She has time. Give her time.
It's hard to watch people you don't even know struggle. None of know how our children will turn out, there is so much that is unknown. And at the same time, I am so sad. I am reading words from many people, and mostly those who are living with children who have a variety of special needs, that seem to be saying that those who are mentally retarded or may be, are hopeless. And they are not. Reading the comment about how deaf people imitated what they saw people with MR doing, with that sense of "anything but that or those people", makes me realize how much further we still have to go.People everywhere, if we are lucky, imitate what they see. That is why inclusion in both school and life in general has been so beneficial to everyone.I've worked with so many individuals, most with severe autism, but many with other disabilities. I've heard the "my child has autism, but is not mentally retarded" so many times in relation to children who are severely autistic with such communication difficulties, who cannot function independently in most ways. Many children who "just" have MR have lives that are so much easier with such connection to the world around them when looked at relatively. Why is one disability "better" than another? Schuyler will continue to explore and travel through her life and astound you with her abilities, no matter what any test scores say.
ReplyDeleteI hope this summer is everything you need it to be--and Our worlds were made to be broken it seems--perhaps broken and rewoven, reinvented, put back together in innovative better ways than before? This is my hope.
ReplyDeleteI am sorry that you're feeling as though your world is falling apart. I know the feeling all too well; I'm just lucky to not be in that moment of special needs parenting right now.
ReplyDeleteIf the main reason that you are feeling this way is the ongoing hangover from the IEP meeting and putative MR categorization for your dear girl, then I can say that when it comes back together it is going to be awesome. I only know because I have fallen apart so many times at Autism's Edges, and when the pieces get pulled back together, as they always have, things have been *way* better.
I'm going to write a post about this today because I am thinking about you and this is getting to be too long for commentland.
Oh, I so didn't want to hurt anyone's feelings. And because I'm not in "your world" I'm more clumsy than usual with my words. (My world is a little girl with Type 1 diabetes...different world but our rainbow's are the same color).
ReplyDeleteBut I also don't think I wrote about MR "with that sense of anything but that or those people." What I know about the story, and I meant to communicate: if you are misdiagnosed, it can be a self fullfilling prophecy, and therefore keep you from reaching your full potential.
In any case, we all our wishing Schuyler and her family get to that silver light asap. Now that's eloquent! -- Stellasmom
uh, I don't have Schuyler's motor control issues but I too, have gotten marker on my nose from smelling the scented ones.
ReplyDeletethey smell so good.
I'm 35 and I still manage to get ink all over myself if given markers.
Hope you all have a fantastic summer!
Love that photo of Schuyler, she's just beautiful.
ReplyDeleteI've been following your blog for a while, and have read your book. I love how you think and how you express yourself, and I feel for you with your reactions to your IEP meeting. I just wanted to weigh in on that dreaded word, "retarded". I have a 5 year old daughter with autism (or that's her diagnosis) and retardation. I have decided to use "the word" because it best describes here. She is behind other kids her age. That's what retardation means, technically. She talks very little, has almost no academic skills, etc. I wish the word could be used in a pure sense, to say that she's slower than other kids in a purely academic sense. I find by allowing myself to think of her that way, it frees me a bit---allows me that "so what?" factor. So what if she's retarded? She's still my girl, my beautiful, fun to be with, sometimes very tough, sometimes very delightful Janey. I love the so what feeling.
ReplyDeleteLove is picture. It is just a moment in time. A time of childhood that will past all too soon. smg
ReplyDeleteHave you and Schuyler watched "The Bear" by Raymond Briggs? The girl in it reminds me of Schuyler a little, she looks similar and the whole movie is done without words. It might be a little young for her, but it is worth watching.
ReplyDelete