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One Small Light

May 13, 2013 in Featured, Featured Member by Robert Rummel-Hudson

photo[2]There’s someone I want to talk to. There’s someone I want to reach. There’s someone I desperately wish would listen to me.

And it isn’t you. Sorry.

It isn’t you because you are already here, at a site called Support for Special Needs. If you’re here, you get it. You’re almost certainly part of the club. You have a disability, or your kid has one, or someone you love or work with. We may not have anything else in common, but the thing that we do share isn’t small. When I come here and I write about Schuyler or my own fears and triumphs as a parent, you might say that I’m right, that sounds exactly familiar. Or you might say I’m full of crap. But you’re probably never going to say “Oh, that never occurred to me.” Because if you’re in the club, there’s very little that hasn’t occurred to you, often in the middle of the night when the shadows are long on the ceiling and the future grumbles softly under the bed.

I love talking to you, I really do. But sometimes, and often of late, I want to talk to someone else. Someone new, someone unaware.

I want to talk to them, and take them by the lapels and pull them close and ask them “Why? Why can’t you see? Why can’t you change? Love is waiting, if you could just see for yourself.”

Over the weekend, I spoke at an event at a local library. It was advertised as a Literary Tea. Once a year, the library hosts a tea and dessert event. You come, you drink some tea (fancy), you listen to a harpist play (very fancy), and you hear an author speak for twenty minutes or so about their book (maybe fancy, maybe very much not so, as it turns out). It wasn’t a disability related event, not at all. The attendees could have heard someone talk about history, or fashion, or squirrel monkeys. That didn’t matter. Tea, harp and fancy talk.

It was, in other words, a gathering of the people I want to talk to most of all these days.

How did it go? I’m not entirely sure. I sold a few books, so that’s good news. I talked to a few people afterwards who seemed to connect with my points about how we can build authentic relationships with the disabled, and in doing so begin to truly change the world. I saw a lot of blank faces. I saw some irritation from time to time. I didn’t reach everyone. I reached a few, I think.

That’s how it happens, I guess, this idea of a fundamental change in our society in its attitudes towards those with disabilities. You reach others, most don’t hear, but a few do.

I have an essay that I’m shopping around to sites that don’t aim specifically at the disability community. I don’t want to give it to a crowd that will say “Hear hear! That’s exactly right! I’ve been saying that all along!”, or even “I disagree, I live in this world of disability too. You’re entirely wrong, and here’s why.”

I want to reach the crowd who says “I never thought about it like that before. I’m going to give that some consideration.” I’ll even take “Why should I care? I don’t know anyone like that. Someone else will take care of it.”

Because every now and then, someone will care. A light, previously unlit, will flicker on, and society will move one more tiny step towards a world that is fair and accommodating, and which will make room unconditionally, for people like my daughter.

I’ll take those tiny steps. I’ll happily watch those tiny lights come on.

World Down Syndrome Day by @hopeandcoffee1

March 21, 2013 in Featured, Featured Member by Julia Roberts

Reposted from last year…

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When I asked Beth, mom to Lauren and Avery, to provide a post for World Down Syndrome Day she was excited that I wanted a photo essay from her and I have to tell you, she did not disappoint! I love these pictures so much and I know you will too…

Beautiful pictures Beth! Thank you for sharing your lovely daughter with us in these photos…# 3 is probably my favorite!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“Today is World Down Syndrom Awareness Day. I may have Down Syndrome, but I am just like you. The next time you see a person with Down Syndrome, smile and say Hi!”

——-

Beth is a SAHM to two girls. Lauren is 5 and Avery is 3. She blogs at Hope and Coffee.

 

Appreciating Support by @erinrbreedlove

August 7, 2012 in Featured, Featured Member by Erin Breedlove

As adults, as parents, as caregivers, and as people who, for the most part, are independent, we understand the importance of showing gratitude for the things we’re given and the people in our lives.

Children, as dependent creatures often have difficulty understanding what appreciation means. Your children, as individuals impacted by disability, need to learn that a little appreciation and gratitude goes a long way. With that, enjoy a story of someone in my life who showed me, truly, that gratitude and appreciation only pay off in the end.

Like most children with disabilities, it wasn’t until about my sophomore year of high school that I began to realize that while there were laws governing how teachers and other support personnel were required to support me, it was often the things that people did just because they wanted to or saw that going above and beyond was the most adequate and efficient ways to do things. In high school, I had a wonderful support team inside the special education department, but outside, it took more work to help teachers understand that just because I had the letters I, E, and P attached to my name didn’t mean that I wasn’t capable or that they shouldn’t have treated me just like any other student. By graduation two years later, my high school was a model for inclusion, and for that, I’m extremely grateful.

When I began my college search as a junior in high school, I was told by several counselors and similar professionals that it was better to search college campuses by meeting with disability service centers and the people who work in them because if they couldn’t meet the needs that I had that were posed by my disability, there would be really no point in me attending the college.

On a dreary October day, I met the most wonderful support system, aside from my mother, I’ve ever had. (Because he doesn’t know I’m writing this, I won’t use his name.) Having personal experience as a parent of a child with a disability, I knew it was okay to tell him that I needed something, that something just wasn’t right, that something went wonderfully. After a rocky start to my college career through the first two years, my MillyDaddy (my term of endearment for him) saw me through it all. We went to church together,  and I had known a lot about his family, a lot about the ways that they were involved in the town. We truly were, and are, family.

In March of this year, I got the dreaded news that MillyDaddy had gotten another job at another state university. I was happy, as this meant that he was moving into the same town as his two children and grandchildren, but I was heartbroken at the same time. What would this mean for me? How would I walk past his office without the floods of tears that happened for the first few weeks after he had left? How do I explain my needs, very specifically, to someone else? The intuition that MillyDaddy and I felt was, and is, astounding.

Thank goodness for e-mail, text messaging, and cell phones. The last few months have been the hardest of my adult life to date. Last week, a friend and I made the trek to see MillyDaddy at his new job, where he was as happy as I’ve ever seen, and where, inevitably, he was the same MillyDaddy he’ll always be. Though I deeply wish he would come back to be with me daily again as he once was, I can be grateful and thankful for the lessons he taught me, not the least of which was the value of appreciation. Because of some things that have happened in my life, he’s truly a second dad, and I’ll always appreciate his support and his love.

—–

Erin can be found at Healthy, Unwealthy and Becoming Wise

A Time Travel Fantasy

July 30, 2012 in Featured, Featured Member by Robert Rummel-Hudson

“How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?” ― Dr. Seuss

This past weekend marked an anniversary that always passes uncelebrated and usually not even commented on out loud, but which never goes by without a great deal of internal musing.

Nine years ago, Schuyler was diagnosed with bilateral perisylvian polymicrogyria. Nine years ago, the monster revealed itself and the future fell dark.

It fell dark mostly because our meeting with Schuyler’s pediatrician and her neurologist at the Yale School of Medicine was largely an exercise in Worst Case Scenarios. That’s not their fault. It’s what we as parents and patients ask for and even demand. “Give it to me straight,” say a thousand tv patients to a thousand tv doctors. We rarely see the followup, that moment of “Holy crap, I would very much like for you to go back and give it to me a little less straight if I could, please and thank you.”

But we think we want to hear the worst of what can happen to our kids, and as their protectors, it is right and proper that we do so. So we heard that Schuyler would probably never speak, that she would almost certainly have seizures which could debilitate or even kill her, she would probably have difficulty swallowing and might require a special diet best described as “everything goes in the blender, enjoy!”, and she would very likely have some level of what was still quaintly but not quite charmingly referred to as mental retardation. Schuyler would drool, she would seize, she would stumble, she would choke, and she would very likely have neither the language or the mental capability to express her frustrations with this life that our infinitely unlikely combination of insanely rare genes had given her.

Nine years later, I would very much like to have a vintage Delorean with a flux capacitor parked outside my apartment, one that I could drive to Connecticut and hit 87 mph right outside the Yale Med School. I would like to be able to go back and find that broken father, the one walking alone out into a perfect New England summer evening with tears in his eyes. I would like to pull him aside and tell him that the future isn’t even remotely as dark as he fears, that it will in fact be the finest decade of his life.

I would tell him how the doctors and the teachers and the therapists he’ll meet in the years ahead will be smart and dedicated individuals, and that they will help Schuyler immeasurably. But I would warn him that those professionals would also largely be as wrong as they could be. Schuyler will break through the wall of Very Bad Things they were building in his mind. She wouldn’t even know she was doing it.

I would tell that father how Schuyler will have a developmental disability but it won’t be extreme, and it won’t keep her from developing into a vibrant, funny and clever little girl. I would tell him that seizures will be late to arrive and will do so on gentle paws, not the grand mal monster feet he’s imagining. Schuyler will eat regular food, I’d say, although she will do so like Jabba the Hutt and somehow remain rail thin, so budget accordingly. She’ll drool a little, but she’ll adopt funky skater wrist bands to address the problem while at the same time starting a little mini-trend both online and in her real world. And her speech will be largely unintelligible to most people, but it will vastly improve, thanks in large part to astonishing speech technology about which he doesn’t have even the slightest awareness yet.

I would tell this younger and sadder me that things for Schuyler won’t be easy, but they won’t be as hard as he fears. And I would tell him that the adventure he was embarking on with his broken yet perfect daughter would define and enrich him in ways he couldn’t even begin to imagine. I would send him home to his family and let him begin the fated work of his young life, raising a strong and wise little girl while becoming perhaps just a little stronger and a tiny bit wiser himself.

And then I would get back in my Delorean and I would return to the present, where my weird and wonderful little monster slayer awaited me.

Bringing Home Zoe and Special Needs Adoption

July 10, 2012 in Celebrations, Featured, Featured Member, From Julia by Julia Roberts

Over the past few months, we’ve been following the story of a contributor at Support for Special Needs, Shannon Dingle and her family and their adoption of Zoe, from Taiwan.

You can read the first post from Shannon on Zoe’s adoption here.

Their story is being documented in photos by the organization The Archibald Project (a non-profit to document the trip and advocate for adoption through photography):

Their photos, Journey to Zoe, are on the organization’s Facebook page.

We hope you join us in congratulating the Dingle family on the adoption of Zoe!

Photo credits: The Archibald Project

To follow Shannon: Shannon Dingle @specialneedsminwww.dinglefest.comwww.theworksofgoddisplayed.com

 

Running on Empty

July 9, 2012 in Featured, Featured Member by Robert Rummel-Hudson

Okay, so here’s the deal. I was going to write about the whole giant internet brouhaha concerning the rapper 50 Cent and his Twitter comments about autism and special ed. And if you’re interested in reading more about that, I’d encourage you to do so.

But if you want to know more, you’ll need to Google it and get all learned up, by golly. Because I honestly don’t have the energy to link it or quote it. My tank is empty.

I’m not entirely sure why. I’ve certainly never hesitated to stand up and shake my angry fists at the sky when celebrities have made similar statements in the past. I’ve written about the likes of Andy Richter, who made a horrible joke about microcephaly and then immediately apologized and seemed genuinely sorry, and Tracy Morgan, whose awful joke about how kids with developmental disabilities are “strong like chimps” was never addressed either by himself or NBC, despite the whirlwind of apologies only weeks before when he offended the LGBT community. I think it’s extremely important to pay close attention to the way people in the public eye address disability. Words matter. And I think it’s important not to just address what these people say, but also to dig deeper into why they say them, and why people may agree with them.

But 50 Cent’s comments, which at first targeted the autism community before branching out to the special education community at large, didn’t trigger much of a reaction from me, and all week, I’ve been trying to figure out why.

Part of it is, perhaps, simply a matter of condescension from me toward the artist himself. He’s hugely popular, and his offending tweets went out to something like eight million followers. That’s a large platform from which to casually make stupid comments. But that’s the thing. His comments WERE stupid. He didn’t have anything particularly well-thought out to say about persons with disabilities. He didn’t even make a joke that depends on some undesirable portrayal of persons with disabilities for its cheap laughs. He used our kids and our loved ones as a weak insult, and God knows that’s both awful and far too common. But for some reason, it didn’t inspire much more of a response from me than “Wow, what an asshole.”

I don’t think my lack of passionate response had much to do with either the celebrity making the boneheaded comment or the nature of the comment itself. I think it’s me.

My outrage tank feels empty. When I hear someone on television or in a movie make a remark about someone or something being “retarded”, I find myself muttering, “Really? Nice.” But I don’t know, I feel the fight slipping from me. Perhaps it comes from observing some of the larger battles that seem to be going against us. Watching special education programs getting defunded or cut altogether all across the country, or seeing families and the technologies that help them get devoured and discarded by cheap legal scuffles, or watching as my own daughter’s school disregards her IEP goals and allows her AAC skills to stagnate and her socialization to wither, these all suck the spirit dry, like vampires or knife-wielding assassins. One bite here, one quick stab there, and before you know it, you’ve bled out.

I know it’s wrong, and I’m sure I’ll find the energy to take up the banner again. But right now, when I hear someone like 50 Cent make a remark using our loved ones as a punchline or a cheap insult, I don’t feel shock or outrage, and I might even feel less anger than before. Honestly? I just feel like I’ve been handed a reminder of how the world sees my daughter and kids and adults like her. It verifies an already known fact, that for every person who loves her (and there are plenty who do, an astonishing number around the world), there are equal numbers and more who see her as valueless, as unworthy of compassion or respect, people who see her (and most likely your kids, too, if you’re reading this) as something less than a person. Fighting that perception feels like too much sometimes. It feels too big, too pervasive, and the symptoms of that perception seem too numerous to address. Expressing outrage at public statements by famous idiots could be full-time work. And the pay sucks.

I’m glad that others with fuller tanks feel up to the fight. I’ll be there again one day soon, I know it. But not just now. I’m running on fumes.

(NOTE: Incidentally, in the interest of fairness, I should mention that 50 Cent did finally apologize for his remarks over the weekend. Well, there you go. Good for him, I guess.)

——–

Please visit Build-A-Bear Workshop’s blog where Support for Special Needs site co-founder is telling her daughter’s story.

Birthdays and Special Needs: Happy Birthday Max

July 3, 2012 in Community Wisdom, Featured, Featured Member by Jennifer King

On the Fourth of July my older son Max will be nine years old, which works out perfectly for him.  Despite his autism he has always loved parades and fireworks.  I may worry about losing him in the crowd, but I never worry he won’t have a good time. He is probably the happiest person I have ever known. I don’t know many people who wake themselves laughing!

This last year was a big year for him. He started spending some of his day in a mainstream class, something that I admit worried me. But after a period of adjustment it worked out quite well. He was also bringing home more and more schoolwork marked, “Did this on his own!” and “Required no prompting!”

He was even invited to a couple of birthday parties. One we passed on because it was at a bowling alley and I was worried about the noise level. We made it to the other one, where they had a bouncy castle and pizza, two of Max’s all-time favorite things.

Towards the end of the school year I was feeling confident enough to allow him to walk from the front door to his bus all on his own. ( I admit I stood in the door I watched.)

His communication remains an issue, his speech team at school feels confident that he is developing functional language skills.

In his own way and in his own time he is gaining independence and confidence, and I couldn’t be more proud of him.

The future remains a question mark, but I try no to focus on that. He has come a long way already, and there is no telling how far he will go.

Yes, it’s easier to imagine a future for his neurotypical brother, but the truth I can’t really know what his future holds either.  And when it comes down to it, what I want for both of them isn’t really so different. I want them to learn and grow. I want develop their gifts as best they can, to be as much as they can.

And I know it’s a cliché to say it, but what I want most is for them to be happy.

So far Max has that one down pat!

——-

Please visit Build-A-Bear Workshop’s blog where Support for Special Needs site co-founder is telling her daughter’s story.

The Iceman Cometh, with his Legal Team

June 14, 2012 in Community Wisdom, Featured, Featured Member by Robert Rummel-Hudson

Originally published March 26, 2012, but given the current standing of Apple to remove Speak for Yourself (SfY) from it’s app store, we thought it was appropriate to run again. Visit here for current information on Apple’s decision the its impact. 

 

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It has been one of the biggest questions floating about the world of Augmentative and Alternative Communication (AAC) since the release of the iPhone and iPod Touch and especially the iPad.

How will the big companies that make expensive dedicated speech devices respond to these new technologies? Will they develop their own apps and expand their work to utilize this new technology? Or will speech device makers ignore the rapidly changing face of technology, like the iceman stubbornly delivering blocks of ice until every house on the block owns a refrigerator/freezer of their own?

Now we seem to have the beginnings of an answer, and perhaps a quintessentially American one at that. They are going to sue the pants off the competition.

Okay, let’s wander into the weeds for just a moment. Last year an AAC app called Speak for Yourself was released that got the attention of a lot of us because of its use of the LAMP (language acquisition motor planning) concept. This focuses on a core vocabulary using consistent motor patterns that do not change. It is the basis of successful language systems like MinSpeak, licensed by the intellectual property company Semantic Compaction Systems for use in devices produced by the Prentke Romich Company, under the brand name Unity. It is these two affiliated companies, Semantic Compaction and PRC, that are attempting to sue the aforementioned pants off the developers of Speak for Yourself.

There’s a temptation to look at this as a sort of “David versus Goliath” scenario, and I can see how that seems appropriate. Speak for Yourself is a development company that actually consists of two speech language pathologists, Heidi LoStracco, MS, CCC-SLP and Renee Collender, MA, CCC-SLP. That’s it, I guess. Meanwhile, back at the PRC corporate headquarters, it’s easy to imagine a big room with a table surrounded by slick lawyers in fancy suits. But the reality is that PRC is a relatively small company, almost like a family operation. They might bring a little less muscle to the table than people might expect. It might be more appropriate to think of this as “David versus David’s older brother Jeff, who wrestled in high school and is still pretty tough”.

But still, yes, it’s two companies and their combined resources against two individuals who draw SLP salaries, so it stil feels wildly unbalanced.

Do Semantic Compaction and PRC have a case? I don’t know. First of all, I’m not an attorney. I don’t even play one on television. I also haven’t had the opportunity to evaluate Speak for Yourself firsthand, although I have been trying to get my hands on an evaluation copy for some time. Word from other users suggest that it does seem to operate in a manner similar to MinSpeak/Unity, but is LAMP, which is mostly responsible for that similarity, a proprietary concept that beings to PRC and Semantic Compaction? Furthermore, in reading the lawsuit, it feels like the concepts named as subject to legal action are very general to AAC. Does this suit open the door to further action against other AAC app developers like the popular Proloquo2Go? The implications go far beyond this one case.

This isn’t just an abstract court case. For many families, this is deeply personal, visceral stuff. Dana is a mother whose daughter has been using Speak for Yourself with a great deal of success. She reacted to this court filing on her blog, Uncommon Sense. I imagine her experience is similar to those of other parents who may suddenly find themselves losing a tool that has been working, and working well, for their loved ones. The tool she’s in danger of losing isn’t just the app, either. She and others like her could potentially lose the ability to use LAMP-based assistive tech on the device of her choice.

This is no small thing, because here’s the most important part of this case. Semantic Compaction and PRC aren’t fighting to remove a competitor in the field of AAC apps. MinSpeak is completely, entirely, 100% unavailable for any iDevice. These companies are working very hard to ensure that if you want to use a LAMP-based language system with your child, you cannot do it on a consumer electronics device, at a baseline cost of $500 for the iPad and about $300 for the app itself. To use a language system that utilizes this concept, you would be required to purchase one of PRC’s devices. Comparable products start at about $7,500. Extended warranties run between $684 and $888 a year.

These are real financial questions, and they are at the center of real family decisions. My daughter has been using PRC devices since 2005, and it is no exaggeration to say that these devices, and more importantly their language systems, have made the difference for her. They have saved her. I can’t overstate how grateful we are to PRC and the amazing people we’ve worked with over the years.

And yet, at Schuyler’s next IEP meeting, we will begin the process of transitioning her from her PRC Vantage Lite, the one she calls Pinkessa, to either an iPod Touch or an iPad, most likely running Proloquo2Go. She’s not in love with the app, but it gets the job done for her, for now. Schuyler gave her own reasons for making that transition, so I’ll let her tell you herself:

Pinkessa was heavy and the backpack was a little heavy too. When I use Pinkessa everybody know I can’t talk. I think the iPad is best choice because it can help me with my voice and look like everybody.

;]

There’s another reason, however, one that she’s not aware of and with which I’m not terribly happy. PRC was kind enough to offer us a two-year extension on Pinkessa’s extended warranty in appreciation for the positive exposure they received from my book and from the appearances Schuyler and I put in after the book came out. It was a good thing they did, too, because Pinkessa is pretty, but she’s high maintenance. We’ve sent Schuyler’s device in at least once a year for big repairs.

That warranty runs out this month. Time to make a choice. Where does the future, and the smart financial choices, lie? In some ways, it’s a tough choice. PRC has made the difference for so long in Schuyler’s life. The thought of stepping away is daunting, and more than a little sad.

But in the ways that matter, it’s not a hard decision at all. The future of AAC tech isn’t in prohibitively expensive dedicated medical devices, certainly not for ambulatory users like Schuyler. And we would love to continue our relationship with PRC and MinSpeak in the form of an app that can transform Schuyler’s iPad into the next generation PRC/MinSpeak speech device for her, but it has become clear that such an app is never going to happen.

I have no idea how this lawsuit will resolve itself, but one thing is becoming clear. My greatest fear seems to be coming true. The company I love and which saved my daughter is going to be left behind. I think they may win this lawsuit but as a result lose the faith of a lot of users, people who would rather use MinSpeak/Unity than Speak for Yourself, but are ready to take whatever they can. As special needs parents and users, we are accustomed to making the best with what we’ve got, and also for searching out or creating innovative solutions.

Neither of which suggest a positive future for companies like PRC when they double down on denial and legal tricks and ignore the desires and needs of end users and the inevitability of technological change.

Ice vendors with vision learned how to make, sell and repair Frigidaires. The rest ended up sitting sadly in their horse carts, ice tongs at their feet and the dust of history gathering around them.

The Future is its Own Kind of Monster

June 4, 2012 in Featured, Featured Member by Robert Rummel-Hudson

As with most of you, Friday was my daughter’s last day of school. It also marked the end of her first year of middle school. It was rocky but she made it. On to the future.

The future is a terrifying place for parents of kids like Schuyler.

There’s a thing about the future that we don’t always face very easily. It’s uncertain. And while that’s certainly true for any parent, this uncertainty multiplies exponentially for special needs kids and their families. In this season when most parents are celebrating the end of the year and student accomplishments, and when unimpaired kids settle in for a long summer of fun, the end of things brings something different for us. Regardless of how successful or troubled the school year may have been for us, mostly we get to the conclusion of this chapter in our kids’ lives and we think, “Oh, crap. Now what?”

It’s rarely an easy or clear answer. The beginning of summer reveals a thing very much like dread, with all its concerns about child care or the unknowns of summer camps, of sustaining the gains made in school, and of the loneliness of kids who without the enforced socialization of school find themselves spending three months without a single friend. For Schuyler, summer means accompanying me to my university office while I work. That was fun when she was seven. Now at twelve, it has lost its charm for her, and I feel guilty making her spend her summer like this. Perhaps this will be the year we find something else, a camp situation that she can handle, one that WE can handle. Until then, thank God for Netflix streaming and the iPad.

The distant future is a terror for families like ours, especially with an only child. I imagine Schuyler as an adult, burying her parents and facing this grand rough world all on her own. So I do whatever I can to expand her family, to increase the number of people who just might give a damn about her if she were to suddenly find herself alone. And yet I also live in hope that she might find a measure of independence on her own, and peace. Schuyler has always been a lonely child, albeit a mostly happy one. I’m not sure if this makes me feel happier or sadder, but by the time she has to truly face the world alone, she will be a practiced hand at it.

Or maybe, just maybe, she will have found her forever person by then, and won’t have to face a solitary future.

The end of school means an end of fretting about school, but that’s a temporary reprieve. For Schuyler, the past year was a big one, and the more we look back on it, the less successful it feels. I’m not sure I feel like she received the support she needed, not from all her teachers. Her special ed team was solid, and they cared deeply for her, but she had at least one mainstream teacher who failed her miserably, and her AAC use was extremely poor, so much so that we are seriously regrouping over the summer and approaching it anew next year.

There are larger issues, though. This school district represented the very best case scenario in the state of Texas. Its commitment to assistive technology and its belief in what we were trying to do with and for Schuyler had convinced us that we’d found a home at last, after years of moving and started fresh and hoping against experience that this time would be different.

But things change. Administrations change, and each one seems to bring a totally new philosophy with it. The current administration believes in total inclusion. Every kid with an AAC device will attend their home school now, no special classes for AAC users, no transitional work, nothing, just throw them into a school with professionals who have been trained to support AAC and the students will flourish. It sounds very wonderful and fair and ambitious, but I’m starting to believe that the most appealing thing about this philosophy, from the school district’s point of view, is that it requires very little in the way of further allocation of resources, aside from the additional AAC training for every teacher. And here’s some news that will surprise you if you are paying absolutely no attention at all: that training isn’t happening. It’s not even happening at Schuyler’s middle school, and you can literally see that middle school out the window of her old elementary school AAC classroom.

Add to this the fact that this school district is cutting teachers, increasing classroom sizes, and of course — OF COURSE — reducing budgets for pesky frivolities like special education and technology resources. And this is the story all over the state of Texas, and I suspect all over the country. And even if Schuyler does make it out of school with something approximating an education and has the skills to live independently, how will she get around? There is no real mass transit in the state of Texas, not to speak of, anyway. Schuyler’s seizures have so far only been observed outside of the doctor’s office, so she’s not on paper as actually, officially having them. But that will most likely change, especially if she graduates from partial complex seizures to something more… dramatic. And when that happens, she won’t be able to get a driver’s license. What then? In Texas, it’s a very dark prospect. In another city like Chicago, perhaps not so much. The future suddenly looks like it lives somewhere that isn’t Plano, Texas. Or even Texas at all. And she’s twelve; this isn’t exactly a distant problem that we can keep putting off.

So we dust off the long-discarded shoes of the nomad parent, long after we thought we’d never need them again.

Sigh. Deep breath.

And so it goes, and so it goes, into the days ahead, the weeks and years, always driving into the fog, bracing for whatever obstacles may suddenly loom large ahead of us.

Our kids have their own various afflictions, but for parents, the future is our monster. We gaze at it in wonder and fear, trying to discern if we see success or failure, happiness or despair, successful learning or frustration, independence or abandonment. Life or death.

The future is its own kind of monster.

 

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Please visit site sponsor Build-A-Bear Workshop’s blog.

Ultimatums and Body Snatchers

May 22, 2012 in Featured, Featured Member by Chrisa Hickey

the body snatchers
On March 31st I gave The Girl a proposal.  Well, not so much of a proposal as an ultimatum.  See, she’d spent most of March in an intensive outpatient program working on RAD and Depression symptoms, but when she came home to the normal daily routine, she wasn’t out of her rut.  The negative, self-deprecating behavior and talk continued.  So I came up with the proposal.  For 30 days she would agree to do three things, every day:

  • Take her meds every day
  • She would agree to get up before school every day and let me help her do all of the hygiene and grooming steps she thinks girls who feel pretty and good about themselves do
  • Do both things even though she things they are stupid and/or won’t make her feel better

She fought it. She sat on her bed and told me it wasn’t going to help, she was just going to be unhappy for the rest of her life, and she didn’t want my help and this was just some scheme to MAKE her take help from me.  I stood my ground. I told her I didn’t care if she didn’t want to do it.  I didn’t care if she was mad at me. She was going to do it for 30 days, like it or not.  I even pulled a play out of my mom’s old playbook and told her that in my house she’d do what I ask, period, or there would be consequences.  She turned up her nose, whined some more, and, the next morning, she got up and whined through my standing over her while she brushed her teeth and I combed and styled her hair.  She whined and complained every morning the first week of April.  It was torture. Her school bus comes at 6:30 in the morning, so to get through the complaining and get her ready for school meant we were up trying to be civil to each other at 5:30.  My husband Tom was placing bets on whether I’d be able to stick it out an entire month.

On April 10 I ran late, and dragged my butt out of bed at 6 AM.  It had been rough going so far and I was not looking forward to having to rush The Girl through everything I was sure she hadn’t done because I wasn’t breathing down her neck.  I was halfway down the hall when she stuck her head out of her room and said, “Mom, I’m not sure what to wear with this shirt. Can you help me decide?”  I stood paralyzed, still halfway down the hall, wondering if I was awake or still asleep and dreaming.  Tom nearly fell out of bed.

She asked for help.  Unprompted.  

The rest of April was practically a dream.  We played with different hairdos in the bathroom mirror before school each day. She asked about different eye shadows and squealed with delight at the realization that mascara comes in lots of fun colors.  She asked for a purse for her birthday.  More importantly, she tells me about her day, every day.  She’s eating. There’s no drama.  Last weekend I seriously considered checking her room for a pod.  The Girl turns 17 in May.  30 days ago, I was convinced we’d never be able to get through to her and make her realize that having a family is a good thing before she turned 18.  It’s only been a month, but I’m feeling a lot more hopeful that we’ve finally found the magic combination to help her learn to attach.  Wish us luck.

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