Tuesday, January 31, 2012

Gee, EEG: So we're going to a fair amount of trouble to do an ambulatory EEG with my son, mostly because I think he may be having absence seizures and also wonder if some of his odd movements might be seizure-related. Plenty of other possible causes, but I'm curious, and professionals are taking my word for it. So now, what do I hope for from this test? On one hand, I hope that seizures will show up, because then I will feel justified in having put him through this, we'll be able to let people know that he's not just ignoring them when he does that, I'll get a gold star next to my name for being right, etc. But ... geez, I don't really want to hope he has seizures. But none showing up on the test doesn't necessarily prove he doesn't have them, just that he didn't just then. So I don't feel like I can really hope the test comes up blank, either. Boy, did I enjoy that long stretch of time when we hopped off the merry-go-round and decided not to look for problems for a while. Not loving the return.

Monday, January 30, 2012

"Where's the Functionality?": Last week on her blog Authentic Inclusion, Lisa Jo Rudy lamented that so many resources on "teaching" kids with autism are interested only in teaching kids with autism to look less like kids with autism, not to give them any particular academic enrichment. I've felt the same annoyance, although with my son and his friends, it's been more a matter of "life skills" than social skills. At some point, the special-education track for multiple disabilities veers off the normal academic highway and into job training, checkbook balancing, food preparation, housekeeping, and all manner of practical skills. Which aren't bad, necessarily -- arguably, typical teens could use that sort of instruction, too. But it's not why we send kids to high school.

I remember when my son got placed in a resource-room algebra class, kind of on a fluke, and his speech therapist shook her head and said, "Where's the functionality?" I was invited to agree that for a kid like my kid, something like algebra could have no possible usefulness. But, for goodness sake, where's the functionality of algebra for anybody? Unless you go on to major in math, probably you could function just fine without quadratic equations. Still, we seem agreed as a culture that things like algebra have some value for training the brain and bestowing on a student a general understanding of the world of learning, and why not open that world to everybody? It does give good practice in approaching things in a procedural way, breaking them down into steps, maintaining focus, and checking work. Those are life skills, too.

It's going to represent a sea change for special education, I think, to roll from the life-skills/social-skills approach to a more academic one. It's a change that will be forced by inclusion, as the sort of alternate universe represented by self-contained classes fades away. I know some parents will miss that, have liked the school taking responsibility for teaching the skills their kid is really going to need to survive. Personally, I'd rather my guy learn things in school I can't teach -- algebra being, oh my goodness, one of those things. I'll take care of the bed-making and the bus-riding on this end, thanks.

Saturday, January 28, 2012

Better Late Than Never: I've been neglecting my intention to post about the Inclusive Class radio shows, although the chats about paraprofessionals and making schools inclusive have been interesting and worth sharing. To double up here, then, here's the widget you can use to listen to the interview from two Fridays ago with Susan Fitzell about working with paraprofessionasl and what they need to be effective:

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

And here's the widget you can use to listen to this past Friday's interview with Mary Falvey, author of the book Believe in My Child With Special Needs:

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

I am being a little more prompt posting links to the radio shows on the index page.

Wednesday, January 25, 2012

The Arc of Advocacy: Disability Scoop had an item yesterday titled Most Parents Pleased With Role In Child's IEP, which right there made my eyebrows raise. Really? Then I guess it's the vocal minority that writes all the books and the angry blog posts. One thing that particularly amused me was this line: "What’s more, parents of younger students were also more likely to be satisfied, the researchers said, suggesting that burnout plays a role as students age." I'd say, rather, there is an arc of advocacy, from abject gratitude to all these learned people who want to help this child you are so fearful for, to growing awareness that these learned people know less about your child than you do, to increasingly heated insistence on having your voice heard and your views considered, to insistence on being the loudest voice, to increasing compromise and acceptance and yeah, at the end, where I am now, a fair degree of burnout. I remember how incredibly pleased I was with my role in my child's IEP when they were in preschool, and how pissed-off I was about it a few years later because I was being disregarded, and how uncomfortable I was a few years after that because I was being listened to perhaps too much, and weren't these other people being paid to provide their expert opinions? Hard to please, yes, I am. It's my kid's life, you know?

Thursday, January 19, 2012

One More Turn on the Merry-Go-Round: Had the odd experience the other day of taking my son to his pediatric neurologist after about seven years away. She released us in 2005 with instructions to just get in touch if we needed something, and until now we have not. But the possibility that his brief spells of tenacious inattentiveness might be absence seizures has remained in the back of my own brain, and while he would not have been able to tolerate an ambulatory EEG in 2005, he is now, and wants to know, and needs to know if he's going to drive a car or get a job or explain to people that no he's really not just ignoring them. So back to the neuro we went, and on the one hand, let me recommend seven-year gaps between appointments, because even if he's behaving his worst, your kid is going to have made some progress. On the other hand, the doctor may not appreciate the full scope of progress and, remembering the younger version, still give you that "this kid?" look when you talk about things like going to college. He's much easier to manage during appointments now than in younger years, and fills out some of his own paperwork, so that's good. We have the EEG scheduled for his school break in February, and I expect it will prove nothing much either way, but every now and then I feel obligated to act like things might.

Wednesday, January 18, 2012

What I'll Be Spending All My Time Working on for the Next Couple of Months: If you're like me, you spend way too much time reading blogs, have way too high a pile of new parenting books awaiting your reading time, and pick apart every TV show for the possibility of a special-needs plotline. Well, here's a way to put all that "research" to good use. I've got eight categories of Readers' Choice Awards awaiting your nominations over on my About.com site, and it's a great way to show some love to your favorite special-needs resources. Check out all the categories, and read the FAQ if you have other questions. Then nominate away, early and often. Nominations end February 15, to be followed by voting and the awarding of ... well, just bragging rights, not even a nice trophy, but there will surely be an nice-looking graphic involved.

Saturday, January 14, 2012

Memo to Doctors and Hospitals: You want to know how to ignite a firestorm for yourself like Children's Hospital of Philadelphia is experiencing? Three tips:
  1. Tell the parents of a child with special needs their child has no quality of life
  2. Tell the parents of a child with special needs that their child is not worthy of the same treatment others might receive
  3. When the parents advocate for the child, say "I have been warned about you," and suggest that fighting for this particular child is an offense to the system
There was a time when those parents would have no recourse but to go home and cry. They'd either go along or go someplace else, and either way, you'd be done with their dissent. But the Internet has changed all that. Blogs have changed all that. Facebook and Twitter and Google+ have most especially changed all that. Parents of children with special needs have reach. They have a way to tell their story where people will listen. They have networks through which to spread that story like crazy. And everybody who hears that story has a way to complain in public, with maximum visibility and extreme prejudice.

And they will, because you know what? Those three comments up there are like red capes to a bull. Every parent of a child with disabilities has heard those comments -- from a doctor, from a social worker, from an insurance drone, from a teacher, from a special-education administrator, from a stranger at the supermarket, from a close family member. We do not have to personally witness a particular incident to believe it is true -- we have a slideshow of that exact experience running in our brains, and we will bring all that emotion, all that righteous indignation, all that scathing anger down on your head. Maybe we weren't able to express it when it happened to us, but it will flow over you like lava.

For me, the slideshow starts with my daughter's birthparents who left her in a hospital in Russia and walked away. I've never understood how they could do that, but the information we received suggested heavily that they were persuaded she would have no "quality of life."

The slideshow clicks, and we're at my daughter's first neurology appointment in the US. The doctor looks at her orphanage records, listens to my answers to his questions, and then says, with contempt, "This child has cerebral palsy. Why did you adopt her?" Clearly, he didn't think much of her quality of life, nor of ours now that she was a part of it.

Click again, and we're at an IEP meeting in which I am struggling to get my daughter switched from self-contained to inclusion. Her speech therapist looks me in the eye and tells me I have to understand that this child will never have an independent life; if I want to be optimistic, I can dream of her one day sweeping the floor at McDonald's, but a sheltered workshop is a more likely reality. Hoping for more would only hurt her. (She's in college now, by the way, so you can see how well I listened.)

Click, click, click. Insult, rejection, slam. Cluelessness, callousness, cruelty. Any parent of a child with special needs has a lifetime of those moments branded onto their brain. We do not forget. And so, when a cause arises that we can add our voices to, oh my goodness will we do so. And you will say that it wasn't like that, and the parent isn't telling the whole story, and there were other reasons, and we weren't there. We will not care. We will remember all the times that we were there. And we will remember exactly what it was like.

And we will make sure that your quality of life takes a quick and precipitous drop.

For more on this story, see my About.com blog post and the running list of posts on the topic I'm collecting there.

Friday, January 13, 2012

If You Could See a Lighter on a Radio Show, I'd Have Been Holding One Up: I got to talk to one of my personal parenting gurus, Howard Glasser, on the Inclusive Class radio show today, and I felt like a squee-ing fangirl at the feet of a rock star, yelling out familiar tunes to play. "Tell the analogy about the video game!" "Talk about Kodak moments!" "Tell us where to put our energy!" I knew all the words, you know? I've been singing these songs since my son was in the fourth grade, and someone referred me to Glasser's Transforming the Difficult Child: The Nurtured Heart Approach, and it actually did transform my personal difficult child, and my style of parenting, and my suggestions to teachers. Awesome stuff. Listen to the episode below to hear me doing the equivalent of a 30-minute "Woooo-hooooo!" as I lean against the stage.

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

Monday, January 09, 2012

Excuse Our Dust: Mothers With Attitude is moving from a host where I have to pay and wrangle HTML to a Blogger blog that will be slightly less spiffy but much much much easier for me to keep up (and pay for, since it's free). The motherswithattitude.com url will move with it, but links to pages off the homepage will be messed up, and the site may be offline for a while in the changeover. Please be patient, bear with me, and take the time to look for your favorite pages and pick up the new url. One thing that's already done is the movement of all my old blog posts to this blog here. Some were still languishing on the old site, and it was fun to see them again as I pasted them in here and recall old times with my kids. If you want to take a trip in a time machine, check out the 2000, 2001, and 2002 posts now in the blog archive at lower right.

Friday, January 06, 2012

Just Managing: Today's topic on The Inclusive Class radio show was classroom management, and boy, talk about something that's vital to the success of students with special needs and yet tough for their parents to control. Often by the time I found out that a classroom-management problem was responsible for my son's behavior problems, most of the year was over. And even if you do develop a network of school contacts who will clue you in on problems, how does a parent address that, exactly? It's become such a cliche that bad parents blame everything on the teacher and nothing on their kid, but sometimes ... sometimes, you know what, sometimes the teacher is the environment that needs to be changed. If you're lucky, you have a teacher who can whisper in your ear all the things to demand in an IEP so that your child will not get that teacher the following year. At any rate, listen to the interview below with Michael Linsin for some thoughts on what works to create thriving and successful classrooms, and marvel with me how much it sounds exactly the same as what makes good parenting of children with special needs.

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

Thursday, January 05, 2012

R-E-S-P-E-C-T, Find Out What It Means to Me: Or what it doesn't mean, in this case, which is nieces and nephews calling aunts and uncles Aunt and Uncle. This has been a Thing with my kids and extended family members, and yeah, I've had the talks about calling people what they want to be called, and showing respect to elders, and yada yada yada. I get that it's important to many folks, my kids' aunts and uncle in particular, and that even kids with special needs should be taught to honor social conventions. But I've been a Whatever Works, Change the Environment, Pick Your Battles mom for so long that it's hard for me to care about honorifics when other more important things are being done right. So, for example, when my kids are behaving well in a big gathering, and eating what they're served, and saying thank you for presents, and showing an interest in conversing with older relatives, I really hate to hear them constantly being corrected for leaving the Aunt or Uncle off a name. Maybe parenting kids with special needs makes you value content over form that way. I'd point out that other young family members have all of the latter with none of the former, but I'll respect their parents' priorities if they'll respect mine.

Tuesday, January 03, 2012

Promises, Promises: Hey, here we are in 2012. The year my son will graduate from high school. The year I'll attend my last IEP meeting. The year I'll have to pay for two kids in college. A banner year in many ways. I made some unrealistic resolutions yesterday on my About.com site, so it seems appropriate to make some promises here as well. I'd really like to make a resolution for the Mothers With Attitude site this blog sprung off of, and that is to find a less labor-intensive way to keep it up so that I can make it a living resource again and not something that gives me a headache at the thought of messing with. The site is currently a mishmash of iWeb pages and old-design HTML pages and a file structure that mixes the two, and every time I try to update it I regret it. Right now, I'm leaning toward bringing all that content over to Blogger, which would have the added advantage of being free. But then I'd have to resolve to set aside a large chunk of time for making the switch, and ... yeah, that'll happen. I resolve to try to figure it out before December 31, anyway.