Tuesday, November 30, 2010

TPGA Book Update

Our editorial team spent much of the Thanksgiving break poring over the inspiring, helpful, & cathartic stories we've published on this site -- and making hard decisions about which ones to include in the TPGA book. (Twitterheads might have noticed Liz's weekend retweets of our more than 100 essays.) We're well on our way to an early February publication.

We had planned to publish a list of contributors on this site today, but have decided that there's no reason to be formally non-inclusive when every last TPGA stories is worthy and good. To paraphrase the Temple Grandin HBO movie, it's a matter of being different, not less.

So, we're grateful for being a blog as well as a book, so that we can continue to feature your wonderful stories every week. Please do keep sharing them with us.

Emily, Jennifer, Liz, and Shannon

Monday, November 29, 2010

Keeping Score

Sarah Schneider
www.kitaiskasandwich.com

From the time M was ten months old until he was about eighteen months, his favorite toy was an alphabet puzzle. My sister found it at a garage sale. It was made of cheap plywood and plastic laminate, and parts of it were broken. It was always grimy and coated with cat hair. M was obsessed with it, and would sit for hours putting the letters in their slots. By his first birthday, he could name every letter in the puzzle and recite the alphabet in three languages.

Friends with children M’s age seemed dismayed when their kids sucked on the pieces while M put the puzzle together for the 700th time. Several said, “We’ve got to get something like this for my kid,” as if the toy itself were the reason for the precocious ability to name the letters. My other sister bought a very fancy version of the puzzle for her daughter -- it was hand-made in France, the pieces carved of beech and coated with non-toxic dyes in subdued, modern colors.

Even though my husband and I were proud of M’s skills, I was constantly irritated by the way relatives would trot this out as a party trick for others to observe. “Show them where the ‘K’ goes, sweetie!” It makes me squirm to hear parents -- who would never think to compare their economic or career success with their peers (at least not out loud, in front of company) — shamelessly compare their children’s developmental milestones.

I was so uncomfortable with it that I found myself trying to shut down other parents who made a big fuss over the alphabet. “Well, your son is walking already,” I’d say. “M barely started crawling last month.” Or, “Yeah, well -- he may know the alphabet but he still can’t feed himself.”

I was just doing what I had always done when someone praised me. My mother thought tooting your own horn was crass and un-ladylike, so I was taught to minimize my academic achievements as a child. “I’m just good at taking tests. They don’t mean anything. They don’t really test anything that matters -- how often do you use high school geometry as an adult?”

I was so used to this script that it was almost impossible for me to hear someone praise my son without shooting back a negative comment to counter it. I realized with horror that I was criticizing him constantly, while he listened, just because I couldn’t stand hearing people say things like, “Well, he’ll be in college before he’s eight!”

When people told me he had beautiful eyes, or that he was sweet or generous or funny, I would smile and accept the compliment graciously. But when they praised him only for this particular skill, it felt dehumanizing. I didn’t want him displayed as a show pony, or pigeonholed as a nerd before his second birthday. I often felt an undercurrent of jealousy or competition from other parents, and I was not interested in entering the race.

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I have always felt that announcing your child is Gifted automatically makes you a Class-A Schmuck. I don’t care that your kid played the violin at Carnegie Hall when he was four and knew his multiplication tables when he was eighteen months old. Every parent in the world is sure their child is “above average.”

There is nothing wrong with being proud of your child, and expressing that pride. But I hear people tallying up their children’s accomplishments as if they were material possessions, and the family with the most stuff wins. It’s a particular status-seeking Yuppie brand of bragging that makes children seem like accessories ordered from a catalog.

It also makes me sad that this kind of conventional academic success is the only thing many people can see to be proud of in their kids. Our culture values reading and writing and success in school so highly that we overlook other talents and dismiss people who don’t excel in this limited arena. I could never find the words to tell the parents who watched enviously as M put the alphabet puzzle together that I felt just as envious of their children’s ability to dance, to walk up the stairs unassisted, and to greet strangers with a smile.

We also believe, as a society, that people who succeed academically but choose not to pursue a high-status job are wasting their lives. My grandmother used to say, “I just don’t think your career is really fulfilling your potential.” What she meant was, “I wish your career was something more acceptable so I could brag about you to my friends. Why can’t you be more like your uncle J (who went to Harvard and was the CEO of some corporation)?” None of her friends were impressed by a granddaughter who worked as a union organizer. “What a waste.”

I hear my husband’s grandmother say the same thing to him. “You were so bright, but you never did anything with it.” Meaning that being a full-time father is, exactly, nothing. Nothing she can tell the ladies at her retirement center about.

But she can tell them that her great-grandson knew all his letters and numbers before his first birthday. This, apparently, is the only achievement any one of us has made that is worthy of her pride. And maybe that’s one of the reasons I bristle when people praise him for it.

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Two years later, we understand that M’s precocious ability to read and write, as well as the ongoing obsession with letters and numbers, are signs of Hyperlexia -- a sub-category of Autistic Spectrum Disorder that is slated for elimination from the DSM in 2013 (it will be rolled into the umbrella ASD diagnosis).

For a few months after the diagnosis, it was hard for me to watch M play. All the things that used to make me feel proud, the skills and quirks that defined him as an individual, suddenly looked like nothing more than symptoms of Autism. His precocious ability to read was a sign that something was wrong with his brain. Something was wrong with his wiring. He was not like me and would never be like me.

I would hear him recite the alphabet, and instead of smiling and feeling proud of my sweet quirky kid, I would think about it as a symptom: Repetitive or ritualized behavior. Abnormal interest in numbers and letters. I tried to encourage him to play with different toys. I desperately wanted his play to look more “normal.” I still thought maybe he would grow out of this; maybe the diagnosis was all a mistake.

It took me a couple of months and a lot of reading before I was able to relax and start seeing M as a person again, rather a cluster of symptoms. M’s “abnormal interest in letters and numbers” is a strength, and a part of his personality; not a “splinter skill” or a symptom of a disorder. In any case, these abilities are a tiny part of who he is -- he is not defined by them any more than he is defined by any of his other “symptoms”: his struggles with pragmatic language, his consistent reversal of pronouns, his explosive tantrums, his chronic gastrointestinal problems, or his sensory processing issues.

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The friends and relatives who spent the most time calling M a “genius” and bragging about his reading skills are the least interested in hearing or talking about his autism diagnosis. Because it is not something they can be proud of, it does not exist. It’s no fun to tell the ladies at the retirement center that your grandson has a disabling neurological condition that you don’t really understand. Instead, they tell us, “It’s all in your head. You worry too much. He’ll grow out of it.”

Many times in the last few months I have had the fleeting and guilty thought that I would happily trade M’s ability to count to 1000 in Hebrew for the ability to say “I love you,” or to give and receive a hug, or to wave goodbye. Fleeting and guilty, because I know these thoughts are pointless. I have the child I have, and I love him, and I would never trade any part of him away. We do not get to choose our children’s personality traits from a take-out menu.

And I do get a thrill watching him recite entire books from memory, but only because of the obvious pleasure he gets from it. I want him to pursue hobbies and develop skills that make him happy. I don’t need him to perform party tricks to elevate my social status among adults obsessed with test scores and getting their kid into the “best” school.

Friends and neighbors and strangers tell me how lucky I am to have such a brilliant child, how proud I must be that he can read so well.

I am lucky, and I am proud. But the things I am proud of are very different from the things other people think I should be proud of. I am proud when he shares a slice of turkey with his brother. I am proud when I see him avert a tantrum after winning a struggle for control of his impulses. I am proud when he laughs at a joke or makes one himself. I am proud when he remembers to look me in the eye and say my name before asking a question. I am proud when he tries a new food, climbs up a slide by himself, or gives me a weird sideways kiss. I am proud any time I see him looking happy and relaxed and comfortable in his own skin.

And I wish other people could see and appreciate these moments and forget about the goddamn alphabet already.

Friday, November 26, 2010

iPads: Near-Miracles for Kids With Autism

Shannon Des Roches Rosa with Robert Rummel-Hudson
www.squidalicious.com
www.schuylersmonsterblog.com

My son Leo's life was transformed when a five-dollar raffle ticket turned into a brand-new iPad. I'm not exaggerating. Before the iPad, Leo's autism made him dependent on others for entertainment, play, learning, and communication. With the iPad, Leo electrifies the air around him with independence and daily new skills. People who know Leo are amazed when they see this new boy rocking that iPad. I'm impressed, too, especially when our aggressively food-obsessed boy chooses to play with his iPad rather than eat. I don't usually dabble in miracle-speak, but I may erect a tiny altar to Steve Jobs in the corner of our living room.

Irony: We hadn't even considered getting Leo an iPad. They seemed awkward and fragile to me, with oversized touch screens that looked as vulnerable as a hermit crab's exposed backside. I felt more comfortable with the sturdy iPod Touch we'd purchased just two weeks before winning the iPad, and which Leo seemed to enjoy well enough. But our boy has difficulty with fine motor tasks -- with making his fingers do small-scale manipulations like pointing and writing -- and also, as it turns out, with the tiny iPod touch screen navigation. He can use the iPod Touch, but it doesn't compel him the way the iPad does.

After Leo spent five minutes with his iPad, I realized that any assumptions I had about it being merely a bigger or a more breakable iPod touch were idiotic. It's a tough little device. And for Leo, the larger scale of the iPad makes everything he wants to interact with just the right size, and therefore totally accessible. He may have a hard time writing on paper or typing on a computer keyboard, but he is a world-class iPad swiper and tapper, and his excellent visual memory means he can use that swiping and tapping to navigate between apps and videos with precision.

Leo mastered the iPad interface within a day. He explores it, he rules it, he loves it. Example: He used to beg me to play the same video sequences over and over again on TVs or computers, because that was the only way he could feel in control of his videos. Now that the iPad lets him choose exactly what he wants to watch, he's not only comfortable watching shows in their entirety, but he keeps checking the video home screen to see if I've downloaded new ones.

Leo's Prompted Drawing
He's attempting drawings like we've never seen before on his iPad, via MagnaDoodle-y apps like DrawFree. It's so much easier for him to run his finger over the touchscreen than use a pencil, pen, or even crayon. The following drawing may seem simple, but until last week he had never drawn people as anything more than a smiley face with legs. Now we have ears, hats, arms, fingers, and toes! Serious mama bear pride.

But it's the early learning apps that really let Leo shine, like the spelling program FirstWords. Leo loves this app because it's fun and easy. I love it because he's learning to spell words, and the interface makes that learning error-free. Witness how nimble he is, how engaged:

 

IWriteWords is another intuitively designed favorite, and includes writing as well as spelling -- both challenging areas for Leo. He adores it:

 

Those two spelling apps may be autism-friendly, but they're not autism-focused. The next app, Stories2Learn, is a social story maker for kids with communication difficulties who need support with excursions, routings, or transitions. Our entire family (and a friend) had a great time putting together the photos, captions, and voiceover for a social story about Leo visiting a local cafe -- the process was so easy, and fast. And I firmly believe that a scenario-prepping social story about going on a boat made that previously unimaginable scenario work for Leo when we took him to sea for two days this past summer:


Leo may have communications difficulties, but he is a visual boy and a visual schedule pro. We have started using a visual schedule app called First Then Visual Schedule. It comes with a library of stock images, though you can add your own. It took me about 20 minutes to set up Leo's exact morning schedule, from getting out of bed and taking off his jammies, to putting on his backpack and getting on the bus. Leo almost couldn't believe that his beloved iPad could contain his beloved visual schedule too.

Kids with communication difficulties have a lot of choices when it comes to AAC (augmentative and alternative communication) apps, which let users tap symbols or icons to produce speech. Choices include MyTalk, TapToTalk, iComm, iConverse, and the robust ProloquoToGo. The most straightforward AAC app I've found is iCommunicate, which has a simple "list of icons" option that suits Leo well. The other AAC apps have nested/categorical interfaces that facilitate verbal requesting, but Leo is quite good at that already -- what he needs is practice holding a conversation.

We maintain a list of social questions for Leo to work on; with iCommunicate, we were able to create a list of answers to those questions for him to access and tap on any time -- and (bonus) he even did some of the icons' voiceovers. [Note: I was provided with a bonus copy of iCommunicate, but that has no bearing on my opinion. The other AAC apps were more than Leo needs.]

Since Leo was not able to demonstrate the full power of his iPad with respect to AAC, I asked about a power AAC user: Robert Rummel-Hudson's daughter Schuyler. Here's what Robert had to say:
I would say that for the most part, the iPad has exceeded our expectations. Schuyler's level of enthusiasm has been the most positive thing; anyone who has dealt with a child using AAC knows that the biggest impediment to implementation can often be the kid's hesitance. It's an unnatural way to communicate, and they sense that. The iPad feels so intuitive and, yeah, so cool that it keeps her fired up about using it.
I know that Schuyler is occasionally disappointed by some of the limitations of the iPad, particularly the lower volume level than she's accustomed to being able to use on her Vantage in crowded places. She's also accustomed to the MinSpeak language system on her Vantage, which is a bit more complex and robust than Proloquo2Go, and so we're constantly trying to customize the app to give her some of the same functionality. Customizing Proloquo2Go is much easier than the Vantage, though. She's also frustrated from time to time by Proloquo2Go's tendency to randomly clear the speech area display while she's putting together a statement, but she's gotten skilled at using the "Recents" tab to quickly reconstruct whatever she was working on.
It's also become clear that Schuyler loves how she can quickly move from the "typical" world (games, music, video, etc.) to AAC, and on a device that doesn't identify her as having a disability. At this point, the iPad is supplementing her Vantage. This is mostly because she's still getting accustomed to the iPad, but also because her AAC class is built around MinSpeak. These days, she takes the Vantage to school and uses the iPad at home or when we go out. I don't see this changing anytime soon, unless Prentke Romich licenses MinSpeak for the iPad. Then all bets are off.
Schuyler loves some of the interactive eBooks like Alice in Wonderland (the one with the crazy, motion-sensitive animations) and read-along books like How to Train Your Dragon and Toy Story. She also likes some of the word games like Chicktionary and WordSearch. Although I must confess that our family's unhealthy addiction to the game Angry Birds began when Schuyler played it on an SLP's iPhone at a conference a few months ago. She loves playing games on it, too. Which is fine with me, since it keeps her interested and emotionally invested in the iPad as a part of her day-to-day life.
Leo likes to play games on his iPad, too. He currently prefers ShapeBuilder and TappyTunes (he's a musical boy, after all) and is intrigued by free-form creativity apps Faces iMake (ukelele!) and Jelly Doodle.  He's a pro at  Fruit Memory, Splish Splash Inn, Monkey Preschool Lunchbox, and Whizzit 123, and is determined to succeed at uConnect and Square-Off -- though he's still working on technique with the latter two. So while his gaming might not be that of a stereotypical nine-year-old, he's got the attitude down -- given a choice, he'd rather be geeking out in front of an interactive screen.

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Shannon's writings and interviews about autism and iPads:
www.squidalicious.com/p/on-ipads.html

Leo's iPad apps for kids with autism starter kit:
www.squidalicious.com/2010/11/leos-ipad-apps-for-kids-with-autism.html

The HollyRod Foundation wants to get more iPads to kids with autism:
www.crowdrise.com/hollyrodfoundation/fundraiser/hollyrod

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A version of this essay was published at BlogHer.com.

Wednesday, November 24, 2010

Grace Needed an AAC App, So Her Mom Created One

Lisa Domican
www.graceapp.com

There was no single thunderbolt moment when I understood my son, Liam, was not like other children. No “I knew where I was when John Lennon was shot, or Man landed on the Moon." Instead it came over a number of weeks in one difficult summer, when little things started to add up and my husband managed to convince me that it was time to look for help.

Liam was a bright, happy and alert little boy and everyone loved him. He was obviously clever; leaning out of his stroller at 18 months to look at road signs. But sometime between his second and third birthdays, my husband started asking questions. Liam wasn’t talking, he wasn’t looking at anyone, he wasn’t answering to his name -- he was leading us to the cupboard to get a drink, but not asking for it.

I resisted at first. Liam was perfect in my eyes, and he would catch up on his own. But eventually, my husband convinced me to bring Liam to our public health nurse and we got a referral to a Paediatrician who we started seeing regularly every few months.

After six months we demanded our diagnosis of autism, because the old Doctor we were seeing felt that that there was still a question mark, that we should give it “more time.” However, we knew by then that we needed to get on to waiting lists, and the diagnosis allowed us to get him into the Autism Intervention Course at the Autistic Association of Queensland in North Brisbane where we lived at the time.

Doubt and Denial still reigned. Even after Liam started at the centre, I was still hoping that maybe he had Asperger's or something else. The sign over the door said ‘State Autism school,’ but one day I asked Liam's teacher, "Is there any doubt?’ And she said, ‘No, there’s no doubt. He is very autistic.'”

The next few years passed in a blur, as we tried to secure services and struggled to cope with Liam's increasingly difficult behaviour, and my attention was divided between Liam and his little sister Grace, who was born 20 months after her brother.

Gracie was breech, and delivered by a planned c-section at 38 weeks -- “before she was ready,” in my opinion. The midwives had tried to turn her but she was tucked up so tightly under my ribcage, there was no chance of a natural delivery. A sign of the tenacious personality that was to come!

The day she was born she was put onto my chest, and she stayed there for the next two years. She wouldn’t sleep on her own, wouldn’t stop feeding, and I thought it was because she’d been forced into the world "too soon." To me, Grace was fine. But my mother said, “Look at her, Lisa. She’s not interacting. She’s not looking at anyone. She won’t wean."

And I suppose I just knew.

So off we went to the Paediatrician again, but this time it was water off a duck's back -- I knew why we were there and what was coming.

There was a wooden stacking toy with colored discs that you put on to each peg in the waiting room. I moved a red disc to a peg where there were blue ones and Grace went ballistic. And in the doctor's office Liam helpfully rearranged a set of antique surgical instruments -- it didn't take much for Dr. B to write the letter of referral this time.

Shortly after this, we moved to Ireland. I started Liam on Picture Exchange Communication under the instruction of the Senior teacher in his State Autism Unit. The Picture Exchange Communication System, or PECS as it is known, works by allowing the user to make sentences out of a sequence of pictures, then present them to a Carer, Teacher or Peer. It ensures that the User approaches and practices their speech while enabling them to get exactly what they need with the pictures -- lots of pictures!

Liam was just 4 1/2 when we introduced PECS at the start of the Summer 2002, but I don’t think we’d got past two pages of cards with him when we were out one day and he said “I want Toilet” independently -- a good day!

For Grace, however, the process of learning to communicate was much slower. I had to do it all myself, as there was no provision for speech therapy for Grace in the State Autism Preschool that she had started in that Autumn.

I approached PECS very methodically, did the two-day course, followed the manual, bought the CD, made several different sized books for staying in and going out.
I took my data and learned everything there was to learn about it. And kept it going, for the next six years.

Grace was extremely good at communicating her needs with PECS but she relied on me to add to her vocabulary with new cards. As a Mum with two autistic kids, there was often a delay in taking, saving, printing, and laminating those new pictures.

As a result Grace was amazingly skilled at getting what she wanted using shapes, colors and numbers. She could put together a picture sentence that said “ I want eigth black triangle toast” meaning she wanted Vegemite Spread on toast cut into eight triangles. But she still couldn't say “I want Toast”

When Gracie was just six, we were doing an ABA Program with a home tutor self-funded with bank loans (we told the bank manager it was for “Home Improvements” and it was, sort of). Gracie had started to make animal sounds while playing with a pop up book and one day when the Tutor said “What's That?” Gracie got out her cards, made the “Its A” sentence, and said quite clearly, “Lion” -- I will never forget it.

It was still difficult for most people to understand her approximations, she would say “Dink” for drink or “Tote” for toast. But it was enough to encourage me to continue to try and develop her vocalisations, while maintaining her picture communications as a prompt. Gracie is really smart. If she could tell that someone couldn't understand her, she would go back to her book and make the sentence with PECS until she got what she wanted.

Eventually “Tootar” became “Cootar” -- meaning "Computer," as her articulation improved. I taught her requesting using verbs with a little travel PECS book that we brought swimming: “I want Mummy Jump” would get me to do a cannon ball into the pool. One day she got fed up with getting out of the water to make the sentence and just called it out while she was treading water: “I WANT -- MUMMEE -- JUMP!” I made a very big splash for her!

In 2008, when Grace was eight and Liam ten, they were finally accepted into a privately managed full-time ABA school called Saplings. We had waited five years for a place but it is no exaggeration to say it changed our lives. No more afterschool home based ABA tutors. No more stress about lack of clinical support services in their State autism school. No more poorly trained unsupervised “care” staff actually exacerbating behavioural issues. I was suddenly unburdened and ready for a new project!

My inspiration for using the iPhone came when I spotted an advertisement for the iPhone on the side of a bus in Dublin. To me, the main screen of the device in the ad, which featured a range of colourful app photos, looked like an electronic version of a Picture Exchange book. At that point I realised the iPhone’s potential as a portable alternative to the existing system and made contact with O2 Telefonica who were supporters of Autism Ireland, my advocacy group. They were very interested in helping and agreed to donate a phone to me as part of their Business Diversity Program.

That summer, Gracie and I got to work, getting pictures onto the iPhone and using it to request treats in the supermarket. But we couldn’t put them in order, and that was very frustrating, because the whole point of the picture exchange system is to put words in sequential order and build sentences that prompt correct speech.

I realised that I needed help, and luckily found a newspaper article about a gifted iPhone app developer, Steve Troughton-Smith. We communicated via Facebook and finally met for the first time at the start of 2009. I brought along all Gracie's Picture Books and drew a big diagram on the back of a shopping bag.

From that Steve created a prototype which he loaded on to my iPhone, which Gracie adapted to expertly. The Big Picture Exchange Book stayed home to gather dust and the iPhone came out everywhere with us.

I started using the device's inbuilt camera to take photos of things that Grace wanted which I stored on the iPhone for next time. Grace watched me doing this and one day I caught her holding the phone, trying to take a picture of a toy she wanted on eBay. She could have just dragged me to her laptop and pointed to it. But I could see she understood that it if the photo was in the phone, then I knew she wanted it!

I told Steve about this and he incorporated the photo application into the app which we then tested with four other children in Gracie's school. He submitted the app to iTunes and it was approved late on the evening of the 11th March 2010. The Grace App was born. Over six months and 600 downloads later we are getting ready for a big update. I set up a Grace App support blog and with the help of constructive feedback via email we have made some changes.

You see, the thing about Grace App is that it won’t do all the work for you -- it’s not a talking box for the child, and it doesn’t let the parents off the hook either. You have to work together, and help your child learn to communicate independently. So it is really for Parents and Carers who have worked successfully with picture exchange, who want to keep developing their child's independent vocalisations but without all the hassles of printing, laminating, and the dreaded velcro!

We have also seen the development of the Grace App User's independent expression as a result. By using photographs which they can take and save themselves, some of our families have experienced the joy of “Shared Attention” for the first time. This is when a typically developing toddler will look up and point at something they find exciting, like an Aeroplane or a Dog and say “Look!” -- just for the pleasure of sharing it with you. When the toddler has developmental and communication delays which turn out to be Autism, this may never happen, and it is one of the hardest things for the parents. Needless to say the next update is going to include a shared attention prompt: The “Look!” card.

Grace App was recently chosen as the Best Mobile Application in the Irish Web Awards.
Being recognized by the Tech community increases their awareness of autism and how they can help improve the world for people with communication and learning disabilities. (I also encourage “early adopters” to donate their old iPhones when upgrading phones, then I restore the old iPhones and pass on to underfunded Autism Schools and Services.)

However the real Reward has been my daughter developing her independent speech, and spontaneously interacting with me -- not because she wants something, but because she wants to share what she is excited about. We have become closer, and that's made it all worthwhile.


You can read more personal stories from developers of awesome apps for kids with special needs at BlogHer.

Monday, November 22, 2010

Advocacy 101: How to Write an Effective Letter

Caitlin Wray
www.welcome-to-normal.com

Odds are at some point in your role as your child's advocate, you will need to write a letter to the powers that be. A masterfully crafted letter can be an incredibly powerful weapon in an advocate's arsenal, but it’s often not an intuitive process; there are unwritten rules and unspoken expectations that need to be addressed, if you're to achieve maximum effectiveness.

I've spent much of my professional -- and personal -- life drafting letters that are designed to effect meaningful changes; it's one of my favourite things to do (yes, I'm geeky that way). To help you find  effective ways to word your own letters, here are some suggestions, along with examples from letters I've written as my son’s advocate:

First make sure you are writing to the most useful and appropriate person. Do your research before deciding to whom you will address the letter, using the Internet to look into the government departments and agencies you should be targeting. Politics and protocol are involved – if you send your letter to the wrong department, it could take months to get rerouted to the right one. If you aim too low in the department, your letter may literally go nowhere because the person you sent it to is clueless about its proper destination. If you aim too high, you may offend and lose the support of the person who should have heard your concerns first.

Once you know who you're addressing, open with a powerful paragraph that demands attention, and sums up the key issues. It should also touch on that person's significance in terms of impact on your family/child. Don’t belabour your points here, just touch on them, in the order your letter will deal with them. For example:
We are currently in the midst of a very challenging situation as we try to secure funding for an Educational Assistant (EA) for our young autistic son who endured a heartbreaking incident at school in November of last year. This letter is an appeal for your help.
Be respectful, but firm. Use language that affirms and legitimizes your concerns, not language that undermines or apologizes for them. For example:

However it is completely unacceptable that, after being put into this position by the atrocious treatment our son received at school, and then doing our best to start all the necessary processes to find the right educational environment for him, we should find  all options closed off by a deadline. We are well-versed in the need for deadlines. We are also very familiar with the need for deadline exceptions.
Limit yourself, if possible, to no more than three key points; any more may lose  impact. While you may have literally dozens of concerns, be realistic in your expectation that they’ll all be addressed. The goal is not to merely complain, but to effect change. So focus on your absolute top priorities – the ones that will have the greatest impact for your child.

Find ways to illustrate how your expectations will benefit not only your child, but the recipient of your letter (or those they are responsible for) as well. Build bridges, don’t burn them, no matter how angry you may be. For example:

Not all children need special consideration, many fare very well on their own. But Simon does require special consideration. As his parents we have done everything we could, with what we knew of the system, to follow the official process for finding him the right school. All we are asking is for the opportunity to review, with the Division, which schools may be the best fit for Simon’s academic and social-emotional well-being. Surely this is in the best interest of everyone – the Division, its schools and teachers included.
Be honest in your accounts and don’t exaggerate (or understate) the facts. For example:
This was very distressing for our family, at a time when I had recently lost my mother to cancer and shortly after gave birth to Simon’s baby brother. We could not convince his teacher that there must be something underlying Simon’s behaviour, that he did not simply have a “behaviour problem.” The Principal understood our concerns and repeatedly directed Simon’s teacher to work with us, but to no avail.
Conclude with a clear, succinct summary of what you expect will happen in response to your letter, and why your expectations are legitimate. And if applicable, why they are legally required. Know your child’s legal rights and the legislation and regulations governing the department you are approaching. All of that information is available online. In the US, www.wrightslaw.com is considered a one-stop shop for legal information on special needs education. In Canada, provincial Department of Education websites are the best source for this information.

In time-sensitive or controversial situations (e.g., I recently read a parent board post from a mother who discovered her autistic son had his mouth taped shut at school) don’t be afraid to state explicitly what your next steps will be if your expectations are not met. Be careful not to use language that sounds overtly threatening. Instead, use language that depicts you as a competent, determined parent who means business.

End with a cordial but official salutation, such as “Thank you in advance for attending to this important matter” or “We thank you in advance for your much-needed assistance in this important and time-sensitive matter.”

Be sure to know the appropriate people to copy or cc: on your letter. This includes those you feel should be aware of the issues you are addressing, such as your child’s school principal or superintendent, psychologist, pediatrician, heads of related departments, your OT, etc. The extra effort it takes to copy people from other departments is often worthwhile, as government departments do talk to each other, and if one department is worried about the fallout for themselves, they will often pressure the other deparatment to rectify the situation expeditiously.

Always keep a copy of your outgoing and incoming correspondence.

If you don’t receive a response -- written or otherwise -- within two weeks, follow up with a phone call indicating that you will be asking to speak with that person’s immediate superior if you do not receive a response within the next week. Always maintain a calm, firm, and professional manner on the phone. The last thing you want is to be known as a “wacko mother” in the department or agency you are trying to engage. No matter how frustrated you become, and even if you are reduced to tears, always communicate in a rational way to effect the greatest change.

Letters really do result in meaningful changes. The pen is mightier than the sword in our ongoing efforts to communicate our children's needs, and rights, especially to those who hold our children's futures in their hands. Don't let important decisions be made without your input, and don't be afraid to write a letter. The cost of a stamp may be one of the greatest investments you'll ever make.

Friday, November 19, 2010

If the Scarf Fits

Emma Apple
www.BlueHijabDay.com

I could write a rather mundane thousand words about what Blue Hijab Day is and that our mission is to create widespread autism  awareness in the Muslim community. I could tell you, it was just a last minute idea which took off on World Autism Awareness Day 2010. All of that would be true, honest and straight from the heart, but instead, I’m going to tell you how it really began, where it really started, how being a Muslim touched by autism compelled me to create Blue Hijab Day.

I’ve always been Emma, no other boxes ever really fit. School box, fashion box, belief box, thinking box, social box, no, it was more like, the origami box with a batman sticker on the side, open at the top. I come from one of those families, the eccentric ones who don’t quite fit the mold, or would much rather break it. You could say it’s in the genes.

No one was surprised when I became a Muslim as a teenager. Religion had always been one of those Emma things (alongside stones, art and frequent furniture rearrangement). I’d never had much luck with friends, but I was infatuated with a friend I’d made online, and had very much fallen in love with his religion -- Islam. I was a new convert to the Bahai’i faith at the time, and it felt like a natural progression to become a Muslim, it was a box I felt fit me, it had the rules, structure, and community I’d always wanted in a religion. I got out every book on Islam in the city library and the more I read, the more I loved it. Peaceful, eloquent, exceptional clarity, equality for women, logical ... so I accepted Islam, and the box still fits almost a decade later. I went on to marry that online friend, and he’s still my best and often only friend.

So, that’s how Islam came into it, and half of how Autism came to it -- although I didn’t know it at the time.

Fast forward many years and I now have the honor of being mother to two amazing little people. There is Madam, who could be described as dramatic, nervous, sensitive, socially awkward -- but she's just her special (and very funny) self. She never grew out of the chewing phase, even well beyond teething, she loves to line things up, the screaming started when she was about 18 months, she read books at age three. This is all in keeping with my family; she’s one of us -- that’s for sure! Her father is intelligent, unusual, and socially inept as well. Asperger's, maybe? Gifted, definitely! Out of sync, well, if that’s what you call wearing scarf and mittens in summer and only underwear in winter.

If the box fits, Asperger's it is. Evidently, that box fits me too, makes my childhood come into focus, and my husband? We can squeeze him in too. And our other child definitely has his toes in the box, he may jump in eventually, hard to say just yet. Madam is the only one with the official stamp, she is how autism really settles into our life.

As a mother and someone who is prone to special interests, Asperger's and autism become an intense curiosity for me (and others in my family). I discovered other Muslim women who have autism of one kind or another in their lives, but as with many other issues, the general Muslim community isn’t quite on board yet, there isn’t widespread understanding that children and adults in our community need so much support. This may be true of the wider community as well.

I’m naturally inclined to soap boxery and activism, and already had an established platform from which to speak at www.muslimasoasis.com, so it crossed my mind in March 2010, only eight days before World Autism Awareness Day, that I could do something about this lack of understanding, at least, I could try. I’d seen some amazingly innovative campaigns for Breast Cancer and Domestic Violence, Pink Hijab Day and Purple Hijab Day respectively, so I thought that since Hijab (Hijab means ‘headscarf’ though the meaning of Hijab is broader) is a Muslim woman's most powerful tool for making a statement, and since these other initiatives had enjoyed so much success, Blue Hijab Day would be a great way to go! Still, the ‘insert-color hijab day’ theme hadn’t been used too often yet; I didn’t expect Blue Hijab Day to gain too much attention.

I created an event on Facebook, hoping 100 people would join my little movement. When we surpassed 100 very quickly, I made a goal of 1,000. We passed that and by the end of the night of April 1st we had over 2,000 RSVP’d on the Facebook event with 4,000 more yet to answer and several hundred Maybes. I made a flier and a tag to be pinned on so our wearing blue would have an identifiable purpose.

I had overwhelming support from people all over the world. The only complaint I heard was that Hijab is a religious requirement and not a symbol to be used in this way; my answer is that Hijab is a religious requirement, no arguments there, but Islam is not so one dimensional that a piece of clothing worn for one reason can’t serve another purpose with its color.

Our stated goal with Blue Hijab Day 2010 was to start the conversation about autism in the Muslim community. We did an interview with a Muslim blogger mom of a child with autism on Muslimas Oasis (www.muslimasoasis.com), and I wrote a short article about part of our experience on the spectrum called Congratulations, It’s PDD. Afterward I created a Facebook page (www.facebook.com/bluehijabday) where I could keep the movement moving year round, a website with information and updates. Eventually I joined the autism community on Twitter (@bluehijabday) where I have received some wonderful feedback from the mainstream autism advocacy community including other faith-based initiatives. I was asked to speak about homeschooling and the autism spectrum on a Muslim women's homeschooling blog talk radio show, and have gotten tremendous support overall.

Plans for next year include fundraising for an exceptional Muslim-American family who has a child with severe autism and three children with a rare genetic terminal illness as well as an unaffected child. We hope to have partnerships and products and a lot more information to use and distribute.

Our primary goal is to create autism understanding, acceptance, and support in the Muslim and wider communities. But at the end of the day, it's still just me, looking in from outside the box, inviting others out into the fresh air. If I can reach the goals I have for Blue Hijab Day and open even a single mind to understanding autism, I only have Allah (God) to thank, and I do.

Wednesday, November 17, 2010

Book Review: Coloring Outside Autism's Lines


I have finally found the book the School Psychologist was supposed to hand me when they gave us my child's murky neurological diagnosis of Borderline Asperger's and Sensory Processing Disorder. 

Susan Walton's Coloring Outside Autism's Lines is a must-have for anyone who finds themselves at the intersection of social inclusion and the company of actual people. It is operating instructions for parents of sensitive, quirky, and differently-abled children. With her proactive and practical suggestions for how to keep your quirky child entertained and engaged in a variety of real-life situations, Susan Walton deserves honorary degrees in Speech Pathology, Occupational Therapy, Physical Therapy, and Child Psychology. Her skillful way of supporting and encouraging grieving parents to push on and pursue family dreams makes her also one part Social Worker. Regardless of where you are in your acceptance process, you will appreciate how Susan acknowledges the Superwoman and Superman in every parent of a child on the spectrum.

Susan offers nugget after nugget of empowering wisdom about how to prepare, engage, and keep your atypical child in her or his zone of proximal development, while also creating a bridge to the world beyond your home. Her advice ranges from very specific ideas about what stand-by items to keep in your car, to general, over-arching ideas about building your own community around your special child and special family. 

In my opinion, her tips and advice pertain to all families and children. Her discussion about children's clothing, from both a sensory and motor planning standpoint, and as a visual way to communicate with other children, will assist parents with the challenge of how to dress their kids. Susan also gives great advice about how to create a cozy, organized home space tailored to your child's sensory needs. 

Creating bonds between your autistic child and extended family members can be a challenge. There is a section in Chapter 6 specifically for grandparents, extended family, and close friends to read. It offers great ideas about how to support you and your child during visits. Chapter 10 offers specific advice about how to navigate the holidays with extended families, how to work compromises and create new traditions that fit your family's needs. Chapter 11 provides great recommendations for sensory-friendly vacation ideas.

This a book that I wish I had owned when my child was much younger. I would recommend it to any family touched by Autism or special needs, and I will be recommending it to my friends, family and clients. Thank you, Susan Walton, for taking your time, energy, and creativity to support other families. You make coloring outside of autism's lines a celebration indeed!

---


Susan Walton and Jennifer Minelli are both contributors to The Thinking Person's Guide to Autism.

Monday, November 15, 2010

Rainy Days and Mondays

Alysia K. Butler

We had our first snow of the season this morning.

When the kids saw it out the window they were beyond excited. I went out to warm up the car and brought in a giant snowball so they could all touch it. That started the mad dash around the house for the winter stuff. Luckily I’m disorganized enough that most of our winter coats, boots, hats and gloves were still out from last winter, so they were easy to find. However, being that disorganized also means that I have no idea what fits anymore.

Howie was clamoring to go outside and play in the snow. Maybe clamoring isn’t the right word. Demanding? Insisting? Perseverating?

It was 8:30 AM and I realized that Howie wasn’t yet dressed for school. We need to be out the door by 8:35 to get to school on time. I pulled him away from the window to help him get dressed. To distract him, I asked if he wanted to wear his boots to school today.

He ran away from me and started jumping up and down. “Hug! Hug! Hug! Hug!”

I grabbed him back and wrestled with his pajamas. I asked again if he wanted to wear his boots.

“No! No! No! Hug! Hug! Hug!”

“No hug until you get dressed and answer me!”

More jumping. “Hug! Hug! Hug!”

“You need to look at me and answer me first! Do you want to wear your boots!”

And did I mention that while this was going on, Lewis would come over and gently tap me on the back with a Wii Remote and fall to the floor and roll around? I’m sure he’s imitating some move in a game that my oldest Gerry plays, I’m just not sure which one.

Autism Mom was on one shoulder, gently reminding me that we would get nowhere until he got his hug. Running Late Mom was on the other shoulder, already at the end of her rope at 8:32 AM on a Monday.

At 8:33 AM, Autism Mom kicked Running Late Mom off her shoulder. I pulled Howie in for a hug.

“I would like to wear my boots and make footprints in the snow around the tree. Now!”

I gathered up Lewis in his winter coat and gave Howie his boots, praying they would still fit. They did, of course. As did his coat and gloves and every other winter item from last year.

We headed outside to the car. At this point it’s pouring rain (this is New England -- don’t like the weather? Wait five minutes). As I put Lewis into his car seat, Howie ran around the front yard making footprints in the quickly melting snow. It was a scene right out of The Snowy Day by Ezra Jack Keats. He was getting completely soaked but he didn’t care. I joined him for a minute and we compared footprints. His smile returned and he climbed into the car without complaint.

At school, we made footprints together as we raced towards the door. I handed him over to his one-on-one aide and reminded her that his sneakers were in his backpack. Howie started to run for more snow, but she caught him at the door. That motion made him slide in the snow, causing his footprints to make a giant swoosh in the now slush by the school stairs. This giant laugh came out of him -- the laugh that tells me he’s going to be OK. I ran back to the car through the rain to get Lewis home. I could still hear him laughing.

When getting Lewis out of the car, I handed him the one pound bag of Dunkin’ Donuts coffee I had bought the day before. He carried it in, and wouldn’t let it go. I turned around for a moment to get my coffee cup ready, and he had climbed up into his high chair. This is usually his signal that he wants something to eat.

Following the advice of the speech therapist, I looked him right in the eye and asked him what he wanted.

He pointed to the bag of coffee.

And for the first time, a spontaneous two word sentence response to a question:

“Sum No-Nut?”

Maybe this Monday won’t be so bad after all.

Friday, November 12, 2010

Tree

Shawn C. Graves

We’ll call him Tree -- trees fascinate him. He climbs them in reality and in his dreams, fearlessly. Tree is five years old. When his mother (Mom) and I started dating, we immediately spoke of our children. I have two daughters, three and seven. Mom has two sons, five and eleven and a daughter, fourteen. We both found out quickly that we were proud parents and shared several parenting notions and ideals. She then explained to me that Tree was autistic. Of course, I have heard of autism before. But I was to soon find out I knew nothing of it. I mean it’s our nature, right? If something doesn’t directly affect us or interest us, we rarely find out more about it than what the media tells us or what mainstream society thinks about it.

I honestly didn’t give the issue much thought -- I was a great parent and kids have always loved me. I practically raised my younger siblings; did a couple baby sitting gigs. I can handle anything kid-related -- bring it on. How hard can this be? I’ll google 'autism' and read a couple web pages, check out what Wikipedia has to say about it, skim through a book Mom has lying around and I’ll be good. That research method got me through college and most projects at work, so ... piece of cake.

As with any new experience, I was full of wonder, curiosity, and apprehension. As a parent of non-autistic children, Tree challenged everything I knew of behavior, understanding, discipline, and development in children. Here I was, high on my horse, silently boasting of my past parenting and older sibling experiences and successes, and in reality, I was totally and utterly clueless how to deal with this amazing boy.

Tree is endearing and sweet -- he will melt you where you stand. He can smile, or wink, or show me his muscles. Or a hug and a “I wuv ew” in Tree-Speak. He will run and play and climb and laugh and bounce. Sometimes, it’s not words at all. He’ll smile and look into my eyes and I’ll smile back looking into his eyes -- more communication than a thousand verbal words could convey. Or, out of nowhere, he’ll come up and give you a little peck on the cheek -- the world instantly becomes a better place. I admire his lack of fear and his sense of adventure. Make no mistake; he will capture your heart.

I see Tree and I see his frustrations with trying to explain to everyone what goes on in his little world. Sometimes his frustrations turn into my frustrations. When he gets confused, hurt, mad, or sad, I don’t know what to do. My instinct is just to talk it out with him and that doesn’t always work. I realized even after all my years of effective communication, education, and parenting, all methods in my arsenal are completely useless. I try to get into his world, but sometimes there’s no path for that. I have to accept that at times there will be a brick wall up and I’m not getting through. Sometimes, as he mother says, he has to “sort it out.”

I have to remind myself not to confuse Tree’s confusion and pain for disobedience or defiance. I try to imagine myself trapped inside my own body, where I have so much to say and express and I cannot find a way to do it. He will try to tell me something and get frustrated because I can’t understand. I get frustrated when I tell my daughters to do something and they don’t understand -- I need to relate more to that fact.

In some ways, we all face that frustration, right? When we can’t get someone to understand or we can’t get someone to listen or agree. It’s that for Tree, except exponentially magnified. He causes me to evaluate myself -- the way I communicate, the way I adapt. I become a better person -- we all do when we learn to adapt and communicate in new ways. To me, autistic development isn’t just about the child learning and adapting. It’s about us as adults learning and adapting. It forces us back to the basics of love, communication, understanding, and patience.

Sometimes, he gets angry and lashes out -- he may scream, kick, bite, hit -- gestures and actions take place of the words he cannot find. I find myself upset sometimes, ashamedly. Are my frustrations rooted in the fact that I can’t figure out how to calm him or understand him? Is it out of impatience or my lack of control in the situation? Or I am frustrated out of my own ignorance? I think it’s a little of all of these reasons. I am constantly challenging myself on dealing with this.

My intent is not to sound like I know anything about autism -- I still know nothing. I don’t pretend to know the full struggle of raising an autistic child -- I don’t have a clue about the trials, the pain, the joy. I am an outsider and am experiencing autism through a child and his mother. I don’t intentionally make rationalizations, conclusions, or generalizations that aren’t true. This is simply how I observe it so far -- very early in this journey.

So, what do I do now? Is this answer in trying to get Tree to understand me, or should I be trying to understand him instead? Maybe both. This is a challenge I look forward to -- a rewarding challenge. I’m amazed and enthralled by Tree and I have just scratched the surface of knowing who he is. Mom often apologizes for his behavior -- the fits, the lashing out, the screaming. I think that sometimes she can visibly see my confusion and frustration. I try and reassure her that she has nothing to apologize for. It should be me apologizing for not having enough patience and understanding. I am still learning that my John Wayne (tough-as-nails, my-way-or-the highway) parenting philosophy I use on my own kids doesn’t work here, at all. This is where I need to change, not Tree.

Wednesday, November 10, 2010

Thanksgiving Table Manners

Hartley Steiner
www.hartleysboys.com

I hate eating with my kids. Really, I do. Our meal times usually push me to the edge of sanity. And with Thanksgiving just weeks away, I am reminded that I will be eating with my kids in a formal setting with other people. Perhaps the turkey is less nervous than I am. Why? It isn’t for the reasons you may think.

I have long ago gotten past the worries about what food my kids will eat, or whether they can stay seated at the table, or their inability to be hungry at meal time, preferring to graze all day. What I haven’t gotten over is their utter lack of table manners.

Yes, table manners.

I hear you -- you think I shouldn’t worry about table manners, that perhaps I have bigger fish to fry. But bad table manners is a pet peeve I just can’t let go. Somewhere in my mind I have attributed the presence of good table manners with a gold star on my Mommy Chart. I try to let it go, really, but the holidays bring my worries back in full force, my own personal race against time to get my kids to "brush up" before anyone else witnesses the horror.

My oldest son Gabriel is the worst. He actually has set the bar so low that it is hard for me to concentrate on the bad table manners of my other two. Gabriel knows our dinner rules; he can recite what the table manners are in nauseating detail, answer a table manners quiz, and remind his brothers (and me) to mind our table manners should we falter -- but, he cannot follow those rules.

And it drives me to the point of madness.

Dinner rules are simple at my house. I don’t feel like I am asking for too much:
  • Wear clothing at the table.

  • No feet on the table.
  • Use your utensils.

  • Keep your hands off your plate as best you can.
I don’t think those rules are too complicated for my sons. Nowhere do they say “You must eat what I am eating” or “You must stay in your seat,” because I am trying to have realistic expectations. Even on Thanksgiving, the rules are the same. They can have chicken nuggets or peanut butter sandwiches, I’m easy. So long as they have a reasonable manners.

How does Gabe challenge my OCD-like need for good manners? He eats at the speed of light, shoving his food into his mouth with fork and hands, in an awkward partnership that is as unnatural as David Hasselhoff on Dancing with the Stars -- all careless abandon and no points for accuracy. The result is my child with food all over him, the floor, the table, his chair, his clothes, his hair. Whoever sits next to him gets covered in the overspray.

Yes, my 9 year old eats like a toddler.

I know this is a complex sensory issue. I even know the role each of his senses each plays in this eating-catastrophe:
  • Need to eat fast/always hungry (Introceoption)

  • Lack of awareness of where his mouth is (Proprioception/Vestibular)

  • Inability to feel food all over him (Tactile)

  • Seeking oral input (Taste)


I also know that eating is one of the few multisensory activities which requires coordination between all eight of his senses*. I understand that his sensory issues make it harder for him to coordinate the incredibly complex motor planning and movements associated with eating.

My challenge is not intellectual, not at all. My challeng is emotional, and it is based on my own expectations of what dinner should be, and how my child should eat. And, to be completely frank, the social stigma of having a nine-year-old who eats like a 2 year old. Especially in public. Or worse yet, in front of guests at Thanksgiving dinner.

For some reason Thanksgiving brings out folks' need (and my specific need) to create a Martha Stewart-perfect dinner. I try to cook the perfect turkey, bake the perfect pies, set the perfect table, make everyone’s favorite side dishes, have a perfectly clean house, and of course be showered, dressed, and wearing pearls before serving the food. It's not realistic.

Neither is my desire for Gabriel to have perfect table manners. Even on Thanksgiving. And you know what? It will be OK. Because Thanksgiving will be a perfect just the way it is. And so is Gabe.

So this year, when our family takes turns going around the table saying what we are thankful for, I may  get choked up listing all the things from this past year -- but one of them won’t be my son’s table manners. Which I think is perfectly OK.

----

*Definitions for the eight senses
  • Introceoption: The internal sense responsible for knowing you are hungry, feel sick, or have to use the restroom.

  • Proprioception: In your joints and muscles, responsible for pressure in and out -- like throwing a ball, receiving a hug, and using a pencil.

  • Vestibular:  our sense of balance, of where your body is positioned in space -- like lying down, turning upside down, jumping and climbing high off the ground.

  • Taste: Your sense taste in your mouth, responsible for recognizing flavor, intensity, and texture.

  • Touch: Your sense of feeling, all over your skin; responsible for how your clothes feel, knowing there is food on your face, and having your hair combed or cut.

  • Smell: Your sense of what things smell like, from freshly baked cookies, to perfumes, , skunks.
  • 
Sight: How you see things, responsible for picking out one object in many, recognizing facial expressions, and adjusting your eyes to lighting conditions.

  • Hearing: How things sound, responsible for knowing who to listen to in a crowded room, organizing directions for a task, and taking in the sound of an alarm or siren.

Monday, November 8, 2010

Progress

Molly Keene
keenesandco.blogspot.com

Today, we were working with letters. I pointed, hastily, at a "z" on its side that looked like an "n."

"Ennnn," I said. "Ennnnnnnn."

"Eeee!" crowed Ollie. He walked over, turned the letter correctly, and said, again, "Eeee."

Well, I stood corrected.

Today, he spelled walrus. Giraffe. Happy Halloween (that one freaked out my friends last week). He can't say any of those words, but he can spell them. He knows the variations of his name, both full length and nickname, and will pull out books with each to compare the two.

Today, he happily shouted letters as I gave phonetic clues.

"Ah!" said I. "Ayyy!!" he replied.

Today, we danced to Lady Gaga and the Glee soundtrack in the kitchen, in between therapy (with letters, today, because that's what he wanted, and we are working on "being with"). Little Bit, in her jumperoo, laughed and bounced. Ollie jumped in place, and then scratched on my tummy, his signal to be picked up. Up he went, and he lay his head on my shoulder and gave me three pats -- a definite sign of happiness.

Today, he lay on the table and stared at the lights. But one foot tapped to the music, a sign that he could straddle Ollie-land and our world and be present in both.

Today, we worked past a tantrum.

Today, I did not cry.

Today, he climbed in the bathtub with his sister. Normally, he doesn't want to be anywhere near her, but today, he touched her face in the bath.

Today, he got out of the bath on his own. Wet feet hit rough bathmat and rose up to tiptoes as he hit the other textures- cold tile first, then soft carpet, then slick laminate. He crowed at the sensory input but wanted to enjoy the cold air on his wet self for just. a. moment. longer.

Today, he sat at the table as we ate dinner. He watched us eat tacos with a strange curiosity, always refusing what we offered. However, there was a definite fascination with the dribbles on the plate -- red salsa, green avocado cream, a smidge of cheese, juice from the steak. He daintily nibbled on a quesadilla, cheese tucked safely inside (so he wouldn't feel its sliminess on his fingers).

Today was progress.

And though yesterday, we went to Target (!!!) and I, under doctor's orders, wrestled him into the stroller and made him deal with the shopping trip. A small, angry creature, trapped in the seat (dear Uppa baby, your strollers are magical, and the straps apparently made of unicorn hair), and his sister, who only notices if he screams in pain now, sat patiently in the jump seat. He screamed at the top of his lungs, tears running down his face. I crooned that we'd be OK, but we were staying. And we survived the trip.

And I walked taller, bolstered by the words of a psychologist who said, "Those who stare don't know what the hell they're dealing with." I wasn't sure if that was in reference to me, or to the situation.

I choose to believe it's me. World, you don't know what the hell you're dealing with. If I can survive the screaming toddler, you are like cake and punch. You are milk toast.

And even though some days I wrestle so much I want to fill a kiddie pool with jello and sell tickets for bystanders ... today was not one of those days.

Today, we moved forward.

Friday, November 5, 2010

Creating a Special Education PTA

Jennifer Byde Myers and Shannon Des Roches Rosa
www.SEPTAR.org

Community is critical for parents of children with special needs. Community gives us emotional support and provides information about our kids’ therapeutic, medical, and educational choices. Our communities have the experience and knowledge to weigh in on our decisions; its members empathize and help us keep going when times are hard, and they rejoice with us in our children’s accomplishments.

It’s not always easy to connect with parents like us. These kids we love so much are vulnerable, they need us – and the demands of our extra-intense parenting can leave us feeling drained and isolated. But if you can muster a burst of energy and round up a few like-minded individuals, then you can create your own community: by forming a Special Education Parent Teacher Association, or SEPTA. That is what we did when we helped found SEPTAR, the Special Education PTA of the Redwood City (California) School District.

Most traditional PTAs are attached to a single school. We found that this model didn’t work for us, as most campuses in our district had only one or two special day classes, or a few students in full inclusion. So we made SEPTAR district-wide, including any family with a child with special needs, from Early Start (age three) through eighth grade. We also reached out to teachers, therapists, staff psychologists, and community leaders.

As parents, we already had a vision of support, education and community. Forming a new PTA also takes resolve, district support, and a lot of attention to detail (at least in the beginning). But it was worth it. SEPTAR is now in our fifth year. We have become a go-to resource for our special education families, with a parent support group, a speaker series, and social events such as weekly park playdates and  “Break from Winter Break” jump house parties.

We have the full support of our District leaders, and put a lot of effort into maintaining open communication, in working with administration rather than against it. And our special education teachers feel supported; we provide grants to help our educators go to seminars, or get our kids the equipment they need. We host a bi-annual conference for parents and professionals on topics that include social skills development, and technology and communication -- to help parents get informed, and contribute to our childrens' educators' professional development.

Our name is out in the community now: we hand out business cards, and we attend the local Education Foundation events. During the last election cycle we even hosted a moderated debate by the school board candidates.

Below is a basic how-to for starting a SEPTA. It may look daunting, but we somehow managed to do all this in less than six weeks:
  • Find at least five people who share a common vision, and are willing to pay dues plus meet together many, many times. You can find these people in your childrens’ classrooms, or on local email parenting boards. Ask your child’s teacher, OT, PT and behavior specialist too!
  • Contact your district’s head of Special Education and ask how they would like to be involved. You could also contact someone from the Board of Education.
  • Select a secretary and a chair from among this first group to undertake responsibilities until officers can be elected.
  • Organize temporary bylaws and nominations committees (we recommend organizing a communications committee as well).
  • Have your chair contact the local district PTA president, or a state representative -- easily done by going online, and searching for your city name and “District PTA President.”
  • Draft bylaws, working with the local state PTA representative the district PTA president helped you locate. This person will ensure that you follow state PTA guidelines.
  • Determine officers, meeting times, and dues amounts.
  • Set a date for the organizational meeting to actually form and charter the new PTA unit.
  • Have the nominating committee draft a slate of officers for the new PTA board. This might happen quickly, or it might take a while if you need to search for people to fill certain positions. At the very least, you must have a president, secretary and treasurer.
  • Set a date for the meeting, and get this information to as many parents as possible. This is why you want to have a communications committee, which can determine the best channels for communicating to as many people as possible. We announced our first meeting in the local paper, via flyers and emails to the schools, and via email to local special needs parenting groups.
  • At the organization meeting, follow parliamentary procedure. The original committee chair should call the meeting to order and state that the reason for the meeting is to organize a new PTA. Then a motion to start a new PTA is made and a vote is taken. If the motion passes (and we're sure it will) a break in the meeting is taken and those present at the meeting join the PTA.
  • After the break, the newly formed PTA elects officers.
  • The new PTA president takes over the meeting, presents the bylaws, and has the association vote on adopting them.
  • The new president may then add other items to the agenda.
  • When the meeting is over, the new president needs to sign a few papers which make the new charter official.
When the paperwork is complete the state representative who guided you through the process will call the State PTA to get the official Employee Identification number (EIN) so the new PTA can open a bank account and begin the actual work of the PTA -- making a difference for your local special needs community.

At every SEPTAR association meeting, we have parents lingering, talking, conspiring, connecting – taking part in a community that understands them and their kids, and wants to support them fully. With a little organized structure, our PTA provides resources, camaraderie, and the opportunity to come together as one community.

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Please keep in mind that PTAs are non-profits, which must meet certain criteria to maintain their non-profit status -- so please check with your State PTA before randomly filing taxes and signing checks!

Wednesday, November 3, 2010

Speaking Out Not Shutting Down

Though it seemed like business as usual here at The Thinking Person's Guide to Autism on Monday, November 1, our editors were participating in The Coffee Klatch's Communicate to Educate 24 hour tweetchat instead of the same-day "Shut Down" autism fundraising campaign.

We'll let some of our favorite activists and advocates explain why we spoke out instead of shutting down:

Steve Silberman at NeuroTribes:
The idea that going virtually mute is an appropriate way to honor autistic people — for whom the Net has opened new avenues of communication and community building — does not sit well with some autistic self-advocates.
TPGA Contributor Corina Becker:
I was recently asked by a person on Twitter to participate, and I responded that there wasn't much of a point, since I am Autistic, and do not require to learn about difficulties that I myself face in communicating. I pointed out to this person that Twitter and Facebook are two of the sites that actually allow Autistics to communicate and connect with others in the community, so I will not be disappearing from the Internet, as it is my lifeline. I also remarked that this is a flawed simulation, since a non-Autistic person still have the capability to text on their phones, and speak verbally, and so would not be totally comprehending the true reality of Autistic disability.
TPGA Science Editor Emily Willingham:
I don't think that shutting down tweeting and facebooking in any way reflects the social challenges my son experiences on a given day, and I suspect that it doesn't reflect the nonverbal experience, either. I don't know what "autistic silence" is, unless it indicates an absence of spoken communication, but I know that autistic people -- verbal and nonverbal --  all the time and are certainly not silent. The empathy doesn't need to be about their lack of a typical route of communication but about understanding the routes they do use.
Ari Ne'eman at ASAN:
...common sense might demand that the best way to have “some idea of what it’s like” for Autistic people and to learn about the challenges, strengths, hopes, disappointments, losses, and opportunities we face every day would be to actually communicate with us, rather than express some token silence.
And we recommend reading ASDMommy's entire post: I Will Not Be Silent.

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Speaking out is the kind of activism we're good at. Educating and sharing information is why we're here. It's the choice that worked for us. If you chose differently, that's a good example of how The Thinking Person's Guide to Autism represents a variety of perspectives from our community -- we'd be grateful to hear from you, too.

Monday, November 1, 2010

How Pip Dealt with Costa Rica

Karen B. Golightly

Last summer I took my three kids to Costa Rica to meet with two other families. For most parents, this would be a pretty big feat. For me, it was a bit more than that. I’m a single mother of three children, aged 14, 11, and 5. Pip, the five year old, has autism, mostly manifested in transitions and lack of much verbal communication. So, let’s drag the crew to a tropical country, where I’ve never been before and don’t speak the language, during the rainy season. I figured, we’d done Disney the year before, Costa Rica would be a breeze. 

There were a few problems. I didn’t figure in the fact that the rental agency wouldn’t have an automatic car, or that I’d have to drive four hours, over a treacherous mountain range, in a huge pick-up truck with a camper on the back, with my 14-year-old daughter navigating. I didn’t even consider the fact that we’d be cooking all of our own meals in an outdoor kitchen with no hot water, that there would be hours and hours of no electricity, and certainly sketchy internet (I teach online), and that the local mosquitoes hadn’t fed in years. I also didn’t realize that it was a new moon, hence, huge tides, which washed out the only road onto the tiny island where we were staying. 

But I also didn’t realize what a brave little boy I’m raising. I had no idea that he could handle a five-hour flight, complete with a layover in Atlanta, then a four-hour drive across the country, and then the next day, a hike through a rainforest, over a series of slippery, rickety suspension bridges in the rain. And that at the end, he’d love the icy cold waterfall and swimming hole as much as the rest of us did. I didn’t think he’d find such joy in the black sands, liquid like quicksand, sprinkled with orange and green rocks and sand dollars as big as your palm. I didn’t think that he’d look at the waves and, all of a sudden, be at peace, washed of the anxiety that grips him at times. I couldn’t fathom that he’d jump with excitement at the sight of his sister riding a horse down the beach. And I had no idea that he’d love napping in a hammock, but he did.

Before we left home, Pip slept in the top of a wheelbarrow bucket on the floor in my room. It was his own creation, from a wheelbarrow that I hadn’t had a chance to assemble. He piled in pillows and his blankets, and snuggled down every night for a year, despite my efforts to move him to a bed or out of my room.

But after Costa Rica, I hung a hammock in his room, and he moved right into it, cherishing the comfort and pressure of the fabric against his little body. He made that corner his room, decorating it with his drawings, his name, posters, his puppet theater, toys, and books. It was the first time he’d made his own space, and he led the way, the hammock as the center of attention. 

While in Costa Rica, my friend’s four year old son constantly called to her, “Momma, I need a drink.” “Momma, I want more cereal.” “Momma, I need you to read me a book.” “Momma, I need help. Now!” At one point, I looked at her and joked, “Sometimes it’s okay that I have a nonverbal child.”

But two weeks ago, we were going for a walk, and Pip saw all of the Halloween decorations out. “Momma,” he said, “look at that pumpkin.” “Momma, look, a witch.” “Momma, there’s a ghost!” It’s continued, this Momma-ism, constantly it seems, to all aspects of his life. And then one day, he said, “Momma, I had a dream.” “What was it about?” “A tree,” he said, obviously pleased with himself. “A tree” it’s been every day since, except one, when it was a circus and a tree. Still, he’s telling me his dreams, and for that I am thankful. I’ll take the “Momma’s” all day long, as long as he’s talking.

When we left Costa Rica, we were all exhausted. We had ziplined, learned to surf, ridden horses, tromped through national parks and rain forests, and swam in the most beautiful ocean I’d ever seen. We’d ridden over a mountain range, filled up the rental truck at a gas station that was patrolled by armed guards, negotiated the capital city of San Jose long enough to turn in the truck at the rental agency, and took a shuttle with our two fifty-pound suitcases and four backpacks, to the airport -- all in the span of six hours. We stood in line to pay the exit taxes (surprise!) and filled out a lengthy form for each person in our party. We stood in yet another line to get our boarding passes and check in our luggage.

Needless to say, lines are difficult for Pip. But he was a trooper until they loaded our two giant blue suitcases onto the conveyor belt. It was as if the last vestige of the familiar was taken away. He was inconsolable. I tried everything from saltines and gummy bears to Coca-Cola and a Ring Pop (my back up to my back up plan). Nothing worked. He screamed and cried, reaching for the luggage, which was clearly gone into the hinterlands of the San Jose airport, screaming, “My suitcase! My suitcase!” 

I practically dragged him through security, where he freaked out even more when he had to remove his shoes, then the restaurant area, then the rest of the airport, through construction, to get to our terminal. I was sweating by the time we arrived. There, a Costa Rican man was playing local music quite loudly. But the music was the thing that calmed Pip down. He sidled up to a window for the best view of the airplanes and soaked in that music like a dream. His brave farewell to Costa Rica.