Thursday, September 30, 2010

We Fight the Fights That are Worth Fighting

Elise, A.K.A. aspergers2mom 

Fifteen years ago, my oldest son was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). At the time, we had no idea what kind of future he would have -- if he would have at a future at all. Autism was not even a word on anyone’s lips at the time; no one was talking about it and no one was even acknowledging the epidemic that it was becoming.

Luckily, I had a cousin whose son had been diagnosed years earlier and I called him for some advice. The best thing that he ever said to me and what I pass on to others is: Do not project the future for your child. Take each day, each moment if necessary, and do what needs to be done at that time. Then one day you will look back and see how far your child has come. That is exactly what I did -- and when I look back, I see miracles.

My oldest, whom we call Collegeman, was falling apart by the time he was five. He had regressed to constant stimming: he couldn't sit through a class, barely spoke, and lacked the social understanding of how to behave. But what he could do was read, and write, and create. We had had no idea that he was hyperlexic. In fact every doctor, every speech therapist, every school I took him to at the time had no idea what they were looking at with collegeman and the ones that did dismissed us out of hand. So needless to say when we received that initial diagnosis we were relieved to know what we were up against and what we had to fight. By the time our youngest, Highschoolboy, was diagnosed we were better prepared and knew what we had to do.

Yes, I say fight. Because it is a battle of wills between a disability that would take your child and hide them behind a wall of silence and you the parent who needs to do everything possible to make sure that does not happen. I know many people do not like the notion and resent when people say that autism steals your child. But it does. Yes you could be one of the lucky ones that are extremely high functioning to the point that you get along fine in society but most persons on the autism spectrum are not that lucky.

I see autism not as a part of my children but as this monster that is in their brain, like a parasite, that prevents them from being whom they were meant to be. It takes things that are so easy and makes life so hard. It takes moments that should be joyful, like high school graduations and bar mitzvahs and makes them moments of pain and trauma. It even takes from them even the joy of a movie because the sound system is cranked up too high and they can’t handle the auditory output. No, don’t say this is about me, this is all about them and anyone who doesn’t understand that has never loved a child. As a parent you want your child to enjoy, revel in and live their life. Being a part of milestones and taking joy in accomplishments and basic fun is part of being a whole human being. When your child can’t do that, when your child cries because they can’t wear a favorite shirt because the feel of it causes them pain, you cannot tell me that that is life. This is not life; this is not something you have to accept. In my book anyone who accepts that their child deserves less of a life, has no business being a parent. So this is why I fight.

But what does that fight entail? Oh so many things. The first thing we did for Collegeman when he was 5, was make the house autism-friendly. We took everything that he was obsessed about and put it in the great room. That became our autism room. He had a place where all his special belongings were and they were kept in the manner that he wanted. We also had a couch and a TV so he and his brother could watch their videos and play their video games. The computer was also in that room so he could access his educational games whenever he wanted. What we did not allow him to do is sit alone and not interact with other persons. We forced him to be with us and to participate in life. We took him everywhere with us. He went to the grocery store, the mall and the playground. Yes, we had to watch him closely and yes, we had to find creative ways to get him to enjoy the outings. Whether it was giving him donut holes so he would sit in the cart or letting him play his handheld while we were out and making sure that he understood how to behave in public.

Organizing his world at home also helped. We scheduled his world, just like that did in school. We made sure that he knew when something was going to happen, how it would happen and what his response should be. We left nothing to chance as best as we could. Social stories and schedules are some of the greatest inventions for persons on the autism spectrum. It helps them know what to expect and social stories helps them learn the unwritten rules of social behavior for that specific event. Don’t think that the social story stops as they get older either. Before something different is going to happen we explain what the event will be and how they will behave. We outline for them what the procedures will be and what someone will expect of them at the event. (At this time, however, it doesn’t have to be written down or cartooned. It is all oral instruction.) Over time too they learn what is expected in any given situation. New situations and transitions are always an issue. But with the proper support and care it can be done with minimal discomfort for the person on the spectrum. Planning, all it takes is planning.

Another aspect of their existence is organizing their world and responsibilities. Now you would think that being creatures of habit and rules that organization would be easy. But it is not. To be able to organize your world to include being able to take care of yourself is very different than keeping to a rigid schedule. What your child needs to learn is how to employ the skills known as executive functioning. These skills enable a person, any person, to know what they need at any given time. They need to know when assignments are due in school, what they need to study and what they need to wear (depending on the weather) for that day. They need to know how to get up to an alarm clock. They need to know how to use a bank, pay for lunch, order lunch. They need to know what to do when they are sick and how to handle a doctor’s office. They need to understand where money comes from and how to pay bills. They need to know good old fashioned home economics.

Executive functioning skills are the skills that help us order our lives. They enable us to take care of ourselves. Again, it is not something that comes naturally to our children, but it is something, as with everything, that they can learn. Now, this does not happen overnight. It takes time and you need to start as soon as you know what the problem is. An executive functioning task is as simple as knowing where to hang their coat and what goes in their cubby in their pre-school class. Everything is age appropriate and even developmentally appropriate. Remember that our children do lag behind their peers, it’s why autism is a developmental disability, but it doesn’t mean that they will not get to the place they need to be. It just means they may get there a little later that is all. So when I speak of the things that Collegeman and Highschoolboy need to work on, remember that they are working on these tasks because they are teenagers, they know where to hang their coats, and what to put in their cubbies. OK they don’t always pick up their dirty clothes off the floor, but we are working on that too (honestly I think that has more to do with being teenagers than having an autism spectrum disorder). As you can see the tasks and requirements get more involved as they grow older, just like for everyone else.

Another skill that I found that we need to work on is transitioning. When the boys were little it was transitioning from class to class. Even from activity to activity inside the classroom. But as they grew older the transitions changed. When they were little the schedules and social stories helped a lot with transitions, they learned what to expect and when. Today the transitions that the boys work on happen to be transitioning to different aspects of life. When the boys went from elementary to middle school to high school, we not only created social stories for them, we took them on tours of the new schools, had them meet some teachers and generally helped them acclimate to their new environment. The interesting thing is that our district did that for all the students, we just did made these trips to familiarize them with their new locations more often than their peers.

This is a great step to take no matter what new environment your child is entering. Even if you are taking your child to a new camp or a new church or synagogue you should go with them and help them familiarize themselves with the area. They can practice sitting in the classroom, the bunks or the pews to get an idea of what it will be like. If possible they should meet the people that will guide them. If no one offers transition support, don’t be afraid to ask for it. It is an important part of helping your child get used to a new situation. In fact, Collegeman just started a new class with a professor he did not know. We asked to meet the professor and he was very obliging. It took all of five minutes, but it was enough so that Collegeman was more secure going into an unfamiliar classroom.

The next major and possibly one of the more important aspects of raising a child on the spectrum is to teach them how to advocate for themselves. When they are very little it is as simple as being able to say “no” or asking “why.” As they get older they need to be able to tell the teacher that they don’t understand what is happening in class. When they get out in the world, they need to be able to ask for help whether it’s in a bank, gas station, supermarket, or a restaurant. These are basic things that we do every day but again it is something they need to be taught how to do. Self-advocacy is more than standing up for yourself in life (knowing how to handle bullies), this is a big part of it too, however, self-advocacy is more about knowing when to ask for help and how to ask for help appropriately.

All these skills, organizing your life, executive functioning, transitioning, self-advocacy is a huge part of becoming an independent person capable of living life on your own terms. It is not something that starts when a person reaches 30 years old. It is something that needs to be taught from the moment your child emerges into the world. Parents of neurotypical children don’t even give any of these things a passing thought. Their children just learn these skills by existing or watching others do it. Our children need to be given step by step instructions on how to handle problems and deal effectively with issues that arise in their everyday world. It is an ongoing process but one that can be done successfully.

Collegeman was diagnosed with PDD-NOS at five years old. The doctors told us not to get our hopes up, as far as what his life would be like. I didn’t get my hopes up; instead I fought like crazy so my children would be able to decide what kind of life they would have, just like every other human being has the right to do. Collegeman is a junior in college. Highschoolboy is applying to college this year.

Don’t let anyone ever tell you your child can’t. Our new psychiatrist just told me that Collegeman would have trouble with the social pragmatics of law school. OK, like I didn’t know that, but it doesn’t mean that if that’s what he wants we won’t figure out a way for him to get there and be successful. Besides who hasn’t met a socially clueless attorney? There are ways to accomplish everything. You just need to never give up the fight and figure out the best way to teach your child what they need to know, to have the life that they are entitled to have.

Wednesday, September 29, 2010

The Child Can't Spell

Elaine Park

My son can't spell. At all. I like to joke about it, because in my culture (Anglo-Canadian) making wry, self deprecating comments is how you get through things while keeping your dignity intact. For example, my favorite line is "My son spells phonetically. I'm just not sure what language it is. Maybe, Latvian? Estonian?"

But it's true. The child cannot spell. He attends a pretty good public school and participates in a program designed to include children with Asperger's syndrome into the general education stream. He's in seventh grade, and after six years of me whining at six years of IEP meetings that the child cannot spell, the child cannot spell.

Solutions are presented and possibly applied. While the people who work in the program are great when it comes to dealing with behavior and social skills, they are not so impressive at follow through on things like help with spelling. Our newest inclusion specialist has read an article about using song lyrics to help with spelling and reading comprehension, but is a bit vague on when and how she will implement it. I push for details, a schedule! She is hopeful, but evasive.

Oh yes, reading comprehension. Another few years of me complaining, nothing happening. The child can read reasonably well, but not when it comes to math word problems. About these: math word problems are devious little traps overflowing with red herrings, arcane sports references, and complex sentences developed by people who hate children. They are designed, as far as I can tell, to ensure that kids who are good at math, but not reading, are not good at anything.

Tuesday, September 28, 2010

For the 85% of Us Who Can't Work


I can’t say I’m surprised to learn that most autistics have a great deal of difficulty getting, and maintaining a job for more than six months. I believe it, because I know just how hard it has been for me. I saddled myself with a wife and two kids before I even got out of the Navy, and for quite a while, the subject of my wife getting a job wasn’t even discussed, because our generation wasn’t much into that. Instead, I took whatever job I could get, starting as a low paid parts clerk, until I accepted my stepfather’s offer of helping me get a job at an iron ore mine, (which paid much more). After I recovered from a huge accident, I returned and worked there for another three years. They gave me some hard and nasty jobs for awhile, such as wrestling with 55 gallon drums, getting other heavy supplies for drill and shovel crews, until I had some seniority to claim an easier job just driving a labor crew around. All of my time there was rough, as it involved interacting with mostly ignorant rednecks. They had all heard rumors that I had won a big settlement from the company for the accident, (which wasn’t true), but they all believed it, and gave me a hard time.

They also gave me a hard time because I lost 30 pounds after the accident, and it took me a couple of years to tip 140 again. The Mexican co-workers called me flaco, (skinny), and the Oklahoman rednecks called me “little perfessor.” I was smarter than all those bastards, my vocabulary and maybe some of my comments gave me away, and they weren’t much appreciative of that. No single “big thing” ever really happened, because it was a large company operation, and also a union place, and no one wanted to lose their job. Still, there was that time when I was sent to the warehouse to pick up a “skyhook.” (Hey, I was only 22, and fresh out of the Navy).

Okay, that parenthetical remark up there was just an excuse ... to hide the embarrassment ... the reason they did it and got away with it and all those other fool’s errands, was because they saw and knew that I was just that naïve. This was back in ’69, thirty years before I was diagnosed with Asperger’s Syndrome.

I can skip over some of my worst moments; working at a car wash, flipping burgers at Jack-in-the-Box, spending 9 months whacking, stacking, and burning weeds in 110 degree heat, slaving away in a factory where we would often be locked in, in order to finish up another couple coaches, working on painting crews, making salads and sandwiches, and sanding and oiling pianos, where I heard my foreman tell another foreman, while both of them were watching me, “It’s true what they say -- Hire the handicapped. They’re cheap, and fun to watch.” I still have no idea what I was doing ‘wrong’; that was about 16 years before I got a diagnosis. I also finished donuts, and ... God, I’m getting dizzy remembering all that stuff.

It wasn’t only the hard work, but all the crap I took from the co-workers, with the refrain of “little professor” repeating itself. Yeah, I did know a lot of things, the academic sort of things that 99% of my co-workers would never understand. I took a Mensa test in ’80 that said my IQ was 150. But the tests I took for diagnosis in ’99, showed that my ‘performance IQ’ was two standard deviations lower. There were other results that showed similar discrepancies in abilities.

This picture was taken, around 1988. I was 41, and only had enough for the next month’s rent, and had just been fired the Friday before Christmas of ‘87, but I had gained a new determination after my father died. I realized I had to take a stand, had to stand up to bullies who just wanted to see me leave. I earned my spot, through talent, skill, and working very hard and long hours. The owner (employer) was the only one who was glad I was there. After making several of my coworkers back down, embarrassing one in front of the others, and playing a sneaky trick of just disposing of another worker’s timecard, I was impervious to their shenanigans. The picture up there is a picture of a “winner,” because of skill and determination, and refusing to back down. I was finally in a pretty good position. The redneck foreman was not my boss, and couldn’t tell me what to do, or how to do it. (It always really bothered me when people would try to tell me how to do something.)

I have a female cousin, maybe a year older than me, and when we were young, we were told she was the ‘R’ word. Nobody knew much about autism back then, but at the time, it was the only explanation for her behavior, the way she spoke, and thought. I’m sure that if Lynne were diagnosed now, it would come up as “autistic,” of the Kanner variety. I've often wondered if I was little bit ‘R’-worded. Certainly, my naïveté and inability to communicate or socialize was pretty pronounced. And yet, I was smarter than most of the people I met, and I'm not bragging. I also know that that would not have been so if I were in any actual academic circles.

I have another “invisible handicap”: scoliosis. “They” knew about it as soon as I took my first physical, before I even joined the Navy. I should have been classified 4-F, but they didn’t do it. After spending some long days of typing, I went to see about my back problem, and they finally told me about it. Even though I had just re-enlisted, I spent the next year fighting the Navy to get out. That scoliosis gave me a big problem with just about every job I ever had, because most of them were manual labor jobs.

I’ve been retired for nearly two years now, and because I retired four years early, I get a very small SS check. It does cover my bills, and for anything more than that, I just don’t give a rat’s ass! I’m perfectly happy doing nothing, because, well, doing nothing is what I’m best at! I’m just so happy to be free, to not have to go to work every day, to not have to eat somebody’s shit just to keep my job, to not have to worry about pleasing anyone other than myself, (okay, and my cat), and I’ve always been free of greed, desire, or jealousy of what others have.

I can look back on a lifetime of some small accomplishments, most of them in the past 23 years, (since I got really determined), and it does give me some comfort to know that I was able to support my family, and then just myself, despite the many problems I had because of my invisible disabilities: scoliosis and Asperger's. In being able to remain employed, through about 50 different jobs, I now realize that I beat some long odds, the ones that state that 85% of us are unable to hold a job for more than six months. I’ve counted them up, and just twelve of those jobs lasted as long as a year, or two, or three. The longest was the last one, Health Aide, which lasted 16 years. Six years before diagnosis, and ten after. So yeah, maybe my biggest accomplishment was just being able to support myself, without any safety net, against such long odds. It makes me feel a little better, even though I don’t have a lot to show for it.

The trick is in not needing much.

I hope that those who want a job, who want to be able to support themselves, just for the satisfaction of doing it, will be able to do it. It’s a great boost for one’s self-esteem. I will support anything that comes along that helps people to become independent, because that’s a good feeling to have. In the meantime, until that happens, I would say to them: Be happy for what you have. Be happy that you have your freedom, have no boss, no co-workers to hound you for being different, to hurt your feelings, to work against you trying to get you fired. If you have a government check, (and are able to live on it), but are living with relatives to make ends meet, then find some way to ‘pay your way’ by doing worthwhile things around the house. There are more ways than just earning a living to gain self-respect.

Finally, I know that not having a job when you know that you could work under the right conditions, is just downright depressing. Living in need is in itself depressing. If someone has never been able to work, for whatever reason, depression can turn into despair. That sucks, it totally does, but I would remind you that people’s problems are all relative. I’d venture that whacking weeds, and stacking and burning them in 110 degree heat also sucks big time! Most of those jobs I had were pretty damned bad, and the near constant hazing from co-workers made them all the worse.

I just want to repeat something I said to the first email list I joined, almost eleven years ago: "We are, each of us, responsible for the thoughts in our heads." We have the power to choose whatever thoughts we wish to entertain, and negative thoughts can only give birth to negative situations. The same goes for the flip-side. I choose to be happy with what I have, and I am. I thank God every night for all that I have, (not that I think He hears me), because I know the mechanics of how prayers can actually work. I know that we are the "authors" of our own lives, we ourselves create our own worlds, and are happy in them (or not), as we choose. Go and be happy, with all your might.

Monday, September 27, 2010

Why My Child With Autism Is Fully Vaccinated

Shannon Des Roches Rosa

Do you still wonder if there's a link between vaccines and autism? Then ask yourself: have you or would you ever let your child travel by airplane? If your answer is "yes," then you should re-examine any concerns about vaccinating your children. Flying and vaccination both carry risks, but those risks are statistically unlikely to affect your family.

You should also know that Andrew Wakefield, the researcher who launched the autism-vaccine panic via a 1998 press conference, had his related research formally retracted and his medical license taken away. You should know that the mainstream media, after years of "considering both sides," now yawns when yet another study fails to find a link between vaccines and autism -- and that gossip sites like want to know why anti-vaccination activist Jenny McCarthy won't publicly end her campaign against children's health. You should consider that decreased vaccination rates put our children's health at risk; children can and do die from vaccine-preventable diseases, and those diseases are resurfacing with increasing vigor.

Still, no amount of evidence seems to satisfy parents who continue to believe in vaccine-autism causation. I understand fears like theirs, as I've been there myself. I remember the stone age of 2003: my two-year-old son Leo had just been diagnosed with autism, and I was desperate to help him.

My first action was to enroll Leo in an ABA program -- the only method proven to help children with autism gain skills. But ABA is hard work and doesn't promise miracles, and I wanted changes, fast. I craved a son who could tell me, "Mommy, I love you!," so I started exploring alternative autism therapies.

And indeed, I found many self-appointed autism professionals who wanted me to look past the challenging but loving boy I already had and focus on a theoretical Recovered Boy of the future. I also found myself looking past their promotion of scientifically questionable approaches, and focusing on one of their popular theories: they thought mercury in vaccines caused autism.

Those anti-vaccination people were passionate about "curing" autistic children. I was passionate, I wanted to cure my autistic child. I did what they told me.

I stopped vaccinating my kids.

My youngest child was born in 2004, eighteen months after her brother's diagnosis and during the thick of my alternative-treatment frenzy. Almost every autism activism resource I found implied or proclaimed that Leo's autism was likely caused by an injected environmental factor. I freaked out, and decided there was no way in hell my new baby girl was getting a shot of anything. Not even vitamin K.

As that fortunately healthy baby grew and thrived, so did the evidence refuting a thimerosal/vaccine/autism link. Unfortunately, so did the rates of preventable and potentially lethal diseases. Turns out I wasn't the only parent who'd been scared into tossing aside my kids' vaccine schedules.

I wanted proof that vaccinations had in fact affected my son, so I formally investigated a possible relationship between Leo's autism and the vaccinations he'd received as an infant and toddler. I enrolled him in a MIND Institute study on autism and regression that tracked the emergence of his autism symptoms via home videos, medical records, and my own journals. 

The result: there was no evidence that Leo had regressed into autism after being vaccinated.

I thought long and hard. And decided that the risks of vaccinating my children were acceptable.

I started slowly, under the supervision of a pediatrician willing to listen to my concerns. My youngest child initially got only one shot at a time, only when she was healthy, and with a month between doses, because I wanted to see how she reacted to individual vaccines. She had no adverse reactions, so I began to allow vaccinations in small batches. I also resumed vaccinating my son -- you know, the one with autism. Both kids remain fine, or at least no quirkier than they were before their shots.

Mine is not the only vaccination perspective you should be familiar with, however. As you likely know, there is no talking about vaccines and autism without mentioning "safe" vaccine advocate Jenny McCarthy. Ms. McCarthy once declared:
"If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f___ing measles."
Really? If we're going to celebrities rather than experts for our information, I have to counter with the Law and Order: SVU episode Selfish, in which a child too young to be vaccinated died from encephalitis as a complication of measles; measles acquired at a neighborhood park from an unsymptomatic carrier kid whose mother refused to vaccinate him.

I'm sorry, Jenny, but Mariska Hargitay, Christopher Meloni, Ice-T, and Stephanie March say that measles kills and that we need to vaccinate our kids not just to keep them healthy, but also to protect other people's kids. And because the SVU team members are celebrities too but outnumber you, I'm going to side with them.

I kid, but only slightly, as I really do prefer my son alive, autism and all. And I seriously doubt Jenny would volunteer to give her son measles -- or pertussis (whooping cough), diphtheria, tetanus, or polio, if she'd actually seen these diseases affect a child, or considered that acquiring the diseases is much riskier than getting vaccinated for them.

Jenny is not alone in underestimating the critical role of vaccines, or the diseases they prevent. In June 2010, I participated in a conference call with EveryChildByTwo, a non-profit dedicated to educating the public about vaccine-preventable disease. I listened as Danielle Romaguera described her infant daughter Brie's 2003 death from pertussis -- a disease herd immunity was supposed to protect the baby from, as she was too young to be vaccinated; a disease vaccine campaigns had squelched so successfully that her doctors didn't recognize it, not until it was too late. A disease that caused baby Brie so much pain and suffering that a Romaguera family friend chose to fully vaccinate her child with autism.

A disease that, seven years later, has been declared an epidemic in California. Katharine Mieszkowski of, using her organization's excellent interactive California immunizations statistics database, observed:
"Marin and Sonoma Counties have reported the highest rates of whooping cough in the Bay Area this year. They also have the highest local rates of personal-belief [vaccine] exemption."
When I talked with Katharine, she said that budget-challenged California schools don't always have the resources or a school nurse to properly monitor immunization compliance.  She also said parents who took out personal belief exemptions were worried about possibilities like their kids' immune system being overwhelmed -- which, to me, means they probably weren't consulting a pediatrician on the matter. And a personal belief exemption doesn't differentiate between skipping a few vaccines, and skipping all of them -- so while we have data on vaccination non-compliance, we don't have complete information on specific vaccination rates. All we know is that California parents are choosing to put their children at risk.

We live in a culture where some people make critical health decisions for their children based on the opinions of celebrities rather than pediatricians. I'm asking you to help right the balance, to ensure that science-based viewpoints counter earnest but misinformed sensationalism in the autism -- and parenting -- communities' information flows.

I know that some people will never vaccinate their kids, no matter the argument or evidence (and 2010 has been a banner year for both scientific evidence and court decisions debunking autism-vaccine links). I also know some kids can't be vaccinated due to health or age conflicts. Herd immunity will compensate, will keep the unvaccinated kids safe from disease if enough other children get vaccinated. That is why we must reach out and talk to parents who are still formulating their immunization opinions, to educate with facts rather than furor, to have the confidence to spread the word about what we know, to tear down the wall of harm that anti-vaccinationists have erected, and to shout out loud: 

There is no link between autism and vaccinations! I believe it is my social responsibility to vaccinate my child!

A version of this essay was previously published on

Thursday, September 23, 2010

The First Rule of Autism Club

 If you have seen the film Fight Club, then you most likely know that the first rule of Fight Club is "we don’t talk about Fight Club."

When we got hit between the eyes with the diagnosis of autism spectrum disorder for our son in December 2007, we had no idea we were joining such a large club. The sensation of knowing for certain that my heart-achingly precious, adorable, vulnerable child had autism was soul-crushing. And all I wanted to do was say it out loud.

If we don’t give voice to this condition, we do the ones we love the most a great disservice. So many people with autism don’t have a voice of their own.

That is why I vowed that my first rule of autism club was that we do talk about autism club. Almost every day I speak to someone about my child and how autism affects his life. I have had some wonderful, important conversations with people, who are grateful for the chance to learn more, especially parents whose children attend school with my son. The most important job I have, as a mother, is to advocate for my children. By being honest, open, willing to talk and share a part of our lives, I am opening not only people’s eyes, but their hearts.

All children need and deserve love, respect, understanding, patience, tolerance, compassion, to feel safe, and a soft place to land.

Parenting is the hardest job anyone can do. It is infinitely harder for a myriad of reasons when your child has different needs -- when your child does not sleep through the night, when your child cannot tolerate the smell and look of certain foods, when your child is overloaded by their entire world in one way or another.

The label of ‘parent’ encompasses an enormous number of roles and responsibilities. When your child has autism, some of these are greatly enhanced -- you become their protector, their advocate, their conduit, and their filter in the world. Your home becomes a safe haven, the place of retreat and respite.

The journey of being a parent to a child with autism has been life transforming for me. I continually adjust to the new normal. Progress can sometimes be hard to see and we sometimes have to accept that this includes backwards steps, too. I take each day as it comes. I have learned to never underestimate anyone and to dream big.

I have discovered that I possess an incredible capacity to endure embarrassment. Such as when my son, after being instructed not to splash too close to the babies and their mums in the local swimming pool, decided to hug the nearest baby and her grandma. After explaining that my son is still learning about acceptable social boundaries because he has autism, I then got to debunk one of the myths of autism -- that all people with autism do not like to touch or be touched. There can be an upside to most situations, it just sometimes takes a while to see them!

Like all parents, I want my children to reach their potential, to have every opportunity to learn, develop and be happy. I try my hardest to be my children’s soft place to land, to be their most passionate supporter. This is no different from any family. The intensity might be different, the focus certainly will be. The excitement of seeing your child who previously has struggled to communicate basic needs, respond to a question from a peer with ease and delight is indescribable.

But I hope you get the picture.

My hope in sharing a little of our story is that everyone knows the first rule of autism club – do talk about it, share, be willing to ask and willing to listen.

Wednesday, September 22, 2010

Advertising for Autism

Dr. Claire Hughes-Lynch
  • The Wyndham Hotel in Austin, TX recently started to offer “autism-friendly” rooms with sensory activities and an alarm on the door that will alert you when the door is opened.
  • Colgate is sponsoring a Dental Tool Kit for children with autism.
  • Dealing with a child’s Asperger’s is a main plot theme in the show Parenthood on NBC, the movie Adam and many, many other more main-stream media.
  • Regal Cinemas offers “autism-friendly” movie showings in which it is OK to make noises, cry and wander around.
  • Discovery Toys just started marketing a line of toys designed for children with autism.
  • And of course, there are the various foods, technology and products specifically designed to educate, cure, support, and raise awareness of autism
I think we’ve just reached the tipping point of autism being used as a marketing tool to reach families. As Kristina Chew said, back in 2007, “At this rate, I’m anticipating the Autism Limited Edition vehicles of various cars.” With 1 in 110 children diagnosed with autism, marketers have realized that if autism is such an "epidemic," there is money to be made off of it.

Don’t misunderstand -- I think this is all great. I am much more likely to book a room at the Wyndham the next time I’m in Austin, even though it is more expensive than my typical hotel. I am thrilled that friends of mine can actually take their child to go and see Toy Story 3 and not have to wait to see it on DVD. I think it takes the stigma out of autism when I see lots of people wearing buttons, ribbons, necklaces, and hats with the various puzzle pieces on them. When I read that young professionals in New York are taking time to raise awareness for autism despite their childless state, I know that the awareness level has been raised. Awareness is the first step in the path to tolerance, to acceptance.

But it is a bit odd to have this family issue, this disease, this condition, this difference, this -- whatever autism is -- considered a niche for marketing purposes. I receive so many advertisements aimed at other aspects of my life. Do I want a credit card that says what college I graduated from? Do I want some face cream to firm up these middle-aged eyes of mine? Do I want to set up a special college savings fund? Do I want pet insurance? Do I want to attend a conference on teacher education? Do I want to shop the special flowers on sale at our local nursery? (No, maybe, yes, maybe, probably yes, probably not.)

It’s even more interesting, when you consider that some recent research indicates that the careers of mothers of children with autism suffer. In other words, we don’t have as much money to spend as our peers, but there’s new competition for how we spend it. Marketers have realized that we are an audience worthy of wooing.

It is clear that there is money to be made in autism. I applaud the public relations efforts of organizations such as Autism Speaks and others who have teamed with businesses, local and national, to raise awareness and to raise funds for research, for support, and for education. But I wonder about the pure-heartedness of the philanthropy efforts of organizations like Proctor and Gamble and the Wyndham when they are trying to encourage me to spend my (limited) money on their products instead of their competitors’. It’s a bit odd when autism becomes a demographic -- something as marketable as my age, my gender, my level of education, and where I live. It means that we, as autism families, have “arrived” in the public awareness when we are a target market.

For the reality is that autism does drive my purchasing choices. We pick that brand of clothing because the tags are sewn on the inside, and that brand of toilet paper because it’s the least scratchy. We don’t buy spaghetti sauce at all because I can’t clean up the stains. We buy a lot of Legos; we buy a lot of gum. We don’t own a vacuum cleaner because it’s too loud and we have a lot of pillows that are placed in strategic hidey-holes around the house. We buy iPods. We buy stuff that is soft, cozy, and sensually interesting -- but not too stimulating. We only shop at Walmart when we’re child-free because the shelves are stacked too high and the building echoes too much; Target is our family store of choice. We go swimming a lot. We do not go to pizza restaurants because of their noise level. We’re online a lot. We go through a lot of toothbrushes and we own a lot of DVDs. Oh yes, autism drives our choices of products, places we shop, and activities.

So, I’m talking to you, Honda/Ford/Toyota. My autism family wants back seats that can be cooled/heated and aren’t too scratchy or too slippery. We want seats that rock. We want seats that squeeze and massage and can be turned off at a moment’s notice. We want blinds that can be adjusted in various directions to block out the glare. We want iPod hookups at every seat. We want doors on the outside that can open without a lot of training, and doors on the inside that can't open at all without a button that parents can control. We want seat belts that can only be opened by the same parental control button. We want fabrics that can be wiped clean of any liquid or material -- bodily or otherwise. We want things for children to kick that don’t bother people in the front seats. We want a car that that doesn’t overload the senses- that doesn’t smell, is too loud or too bright. And oh yes, we want it to look like other cars -- as "typical" as possible. We want to be able to drive without autism riding along.

When you see the puzzle symbol on that special edition minivan/sedan/SUV, you let me know!

Tuesday, September 21, 2010

Looking Back, Looking Forward: What's Next for The Thinking Person's Guide to Autism

The Thinking Person's Guide to Autism (TPGA) started with a brainstorm in a California parking lot May 27, 2010. We published our first post 9 days later, on June 6:

The Thinking Person's Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed. We want to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy.

Think of us as a little bit of Snopes for the autism community -- trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families. Our attitude is cautionary yet loving -- we're honest, but we're not interested in negativity.
We -- the TPGA editors -- have been amazed and humbled by what our contributing writers have shared up until now. Our original plan was to publish a book in mid-summer from the contributed essays, but there was still so much in the pipeline we put the book publishing effort off until late fall.

Our first book will consist of a selection of essays already published on the site. The profits from the sale of that book will go to an autism charity to be named later (we have a several candidates, and the arm-wrestling over which will benefit continues).

But there is more to come from The Thinking Person's Guide to Autism. We have more essays and stories to publish online, and are continuing to solicit submissions. Here are a few of the subjects for which we are seeking submissions:
  • The public image of autism is overwhelmingly WASP (White, Anglo-Saxon Protestant), while the reality is that autism is an equal opportunity condition. We plan to publish more essays from people of color on autism.
  • For a number of reasons, the public image of autism is that it is a condition of childhood. In reality, it is a lifelong condition. We plan to publish more essays from adults with autism, and from caregivers to adults with autism from young adulthood to end of life.
  • Living with autism: practical tips, how to, and mentoring.
Those are just a few of the topics we will continue to address. We want to hear, and publish, what you have to say. Here's what you have to do (more details at the submissions page):
  • write an essay or story between 1,000 to 2,500 words (about four to ten printed pages).
  • The work must be written in or translated into English.
  • the work must be own - you must own the copyright
  • email the work to
  • the submission email subject line should read: SUBMISSION: [Title of Your Essay]
Thanks for your participation and support over the last four months, and we look forward to continuing the conversation in the months to come.

Monday, September 20, 2010

Why I Can't Breathe Tonight

Anonymous Special Needs Professional

Recently I read a post on The Thinking Person's Guide to Autism blog by a parent named Pia Prenevost. It was called An Open Letter to Special Needs Professionals. The title made me feel a bit guarded at first (as a special needs professional), because my experience with Ye Olde Internets is that "an open letter" usually warns that a negative letter, a warning to the recipient of the “Oh, no, you di’n’t” variety, is coming. But that was incorrect, because in reality the author had written a lovely, heartfelt post about the vulnerability a parent of a child with special needs feels. I encourage you to read it, it's beautiful. Here's an excerpt:
“I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.”
I appreciated the beauty and truth of her words. I will share it with parents I work with, happily. And at the same time it made me feel a bit hopeless as a professional, like there is really nothing I can do or say that might help a parent, even though I'm certain that wasn't the intent.

Later I came to find out that some teachers and therapists had commented on the post in anger. I read their responses with interest, because what they were writing had precious little to do with anything Ms. Prenevost had actually written; instead they had responded with their own raw emotion. It was as if they were arguing a completely different post or person, but their emotions were just as high.
Reading those comments from a few professionals left me short of breath. I have felt on the verge of a panic attack for the past two hours, and I've never had a panic attack. I couldn't concentrate on reading with my boys, or putting them to bed, I was so preoccupied.

Why? Where am I? I am, in my mind, back in a long-ago job, which was in a small, well-regarded public school district. A place where I was respected among my colleagues but clearly believed to be an idiot until proven capable to parents, assumed to know far less than my counterparts in private practice. Having come from a private practice job, I had suddenly been demoted to second-class citizen among my clients' parents because I was working in the schools. I can still see their suspicious expressions at my first Open House. It was an astonishing experience, and I never forget it when I walk into a public school meeting as a private therapist. Some therapists are better than others, whether they are in public school or private practice. "You get what you pay for" does not always apply.

Ninety-five percent of the parents I worked with were wonderful, once I had proved myself to them, and that didn't take long. I knew what I was doing. It didn't matter how significant their child's needs were, most of them were partners with us, their child's team. We were a very strong team. They were considerate, polite, and respectful. So were we. That didn't mean we always agreed, but we had the good relationship required to work things out when we didn't see eye-to-eye. 

But the other five percent? Well, tonight I'd say I suffered some trauma at the hands of that five percent, because more than ten years later I am short of breath just thinking about them. 

My colleagues and I were treated very badly. Certain of those parents visited me in bad dreams for as long as five years after I left that job. I was scoffed at in meetings by special education attorneys and expensive "experts" (put in quotes because the most frequent of these was later discredited) flown in from across the country (the school district having been required to pay airfare and hotel bills for these visits on behalf of families). My clinical insights were dismissed by that small group of parents, because to acknowledge that the school team had any insight whatsoever would weaken the "case."

The stress that was caused by a few families affected a great many of us: therapists, teacher, principal, administrators. It was out of hand and inappropriate. The kids didn’t benefit; after all, their parents and special educators were at odds and all adults in their lives were under a lot of stress. I lost sleep. Our work suffered. Good teachers left, and I left. After only three years. Just thinking about it all these years later raises my blood pressure. This is not such an unusual story. I was in an excellent school district.

High turnover in special education? Good people who can make it on their own, fleeing? Yep.

Sure, I could -- usually do -- blame my leaving on lack of administrative support. On high caseloads and insane amounts of paperwork and more than fifty 20-page IEPs per year. On never, ever, even for a minute, feeling like I was doing enough for anyone, or like there was enough funding for me to do my job appropriately. On sitting in a meeting and being grilled by frequently snarky attorneys who were audio taping us while my supervisor sat by not backing me up, pretending she didn't hear the argument while she filled out the IEP paperwork, because she was sick to death of the whole thing and for once the attention wasn't on her. Often we were left hanging in the breeze.

I don't usually admit to myself that the paranoid, fight-at-all-cost behaviors and lack of faith of a very small group of parents also drove me out. Because I love parents; I work well with parents. I am a parent. I get a lot of it. I'd rather pretend that it's only those bad therapists, the ones who are really incompetent, who get driven out. But they both did me in, the fighting parents and the unsupportive administration, and I left the public domain. I'm going to go out on a limb and suggest that I'd have ended up one of those angry commenters anonymously spewing frustration in the wrong places had I stayed in a broken system much longer.

In the past couple weeks, I have read two fascinating posts written by parents I respect greatly, about their initial misinterpretation of their children's teachers this year. Robert Rummel-Hudson writes an apology in a post called Mea Culpa" to the teacher he believes he initially misjudged. And today, another excellent writer (who goes by KAL) wrote a post called "Hello, Doom! Welcome Back to School" about the conclusions she leapt to – and then discovered she might be able to let go of a little bit - with her son's new special education teacher. 

I appreciated that both of these parents shared publicly the emotional roller coaster of a new school year and having to adjust to new professionals, and were willing to honestly share their realizations that maybe things are going to be okay at school after all. Parents have to advocate for their children and I know as well as anyone that many programs and professionals aren’t up to speed. It’s extremely frustrating for us all. But when parents come in armed and ready for things to be wrong and for professionals to be incompetent, the professionals are demeaned on day one and left to play defense in a game no one taught them in college and that no one will win.

Parents of kids with special needs are allowed to share their horror stories about professionals with each other, and they do. Professionals are named and, sometimes, vilified. Sometimes this is warranted; sometimes it is not. But either way, it gives parents a web of support when they share their stories in person, on blogs, on Twitter. This support is important and, I believe, ultimately a very good thing.  Therapists and other professionals may have co-workers they can go to for support, but rarely is there an opportunity to truly give each other the type of support they need to share their own horror stories. Professionals can't write, blog, or tweet about these situations from our point of view in any real sense, or even (legally) talk to our spouses about them. Try explaining one of those contentious IEP meetings to your spouse without using anyone's names or sharing any actual information. We end up with a lot of pent up frustration when we don't have a supportive administrator and time to deal with our emotions. It's more isolating than you'd think. We too need support. 

That's what I heard in the comments that appeared to many to be "off base" in Ms. Prenovost's post. They weren't responding to her words, not really; they were responding to her raw emotion with their own. If, when I worked in public schools, a parent had implored us to excuse them for being our “harshest critics,” I might have wanted to explode, too. But I doubt that Ms. Prenovost herself is her school staff’s harshest critic, because she sounds too self-aware to treat people the way the harshest critics actually do treat professionals. I may have felt bitter back then that I could not write such a letter, imploring greater understanding, too, without getting myself, and my school district, in trouble.  I get it.

We professionals may not physically take your children home with us, but in a lot of ways we take them -- and their parents -- home emotionally, every day and (apparently, in my case) years later. Both the joys and the stresses of the job affect our personal lives and our own family’s lives. As the new school year begins, I implore parents and professionals alike, on behalf of those who work in public schools, to please make an effort to give each other the benefit of the doubt, some support, a little credit, and as much gratitude as we can possibly muster.

Friday, September 17, 2010

Welcome to the Club

An Open Letter to a Friend

Jess at Diary of a Mom

My Dear Friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think  that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful, like, "Dude, that’s retarded." Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You must take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. healthy. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will  help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,



This essay was originally published at

Thursday, September 16, 2010

Creating a Special Needs Binder

Jennifer Johnson

As a parent of a child with both significant medical problems as well as a diagnosis of autism, I have tried to learn things and develop systems along the way to help me in terms of accessing care for my child and getting quality care.  One of the tools that I developed for myself (and then later learned was available online in other forms) is a medical/special needs binder.  I take it to all appointments for my son -- the pediatrician, speech therapist, school psychologist, etc.

Special Needs Binder: Why and How

Whether your child has medical problems on top of ASD or not, you will unfortunately spend a lot of time in the offices of doctors, psychologists, school officials, etc. Each of them is likely to ask you many of the same questions again, and some will ask you the same things multiple times. My son has developed a phobia of doctors and also is not patient when I am attending to other people. So, I have found it extremely helpful to type up a handful of different documents and have them in a binder I take to all appointments.

These documents help for several reasons: if you have a child who cannot sit while you are interviewed, if there are things you don’t want to say in front of your child, if you want to make sure that you have been thorough in the midst of a potential tantrum, and so that you don’t feel that you are having to recount your story one more time! Here are the things I always have on hand:
  • A document of bullet points of my son’s medical history, including diagnoses (date, who made it), medications (who prescribed, date started, dose), surgeries (dates), hospitalizations (dates), etc.
  • Brief developmental status: age equivalent levels for each area (gross motor, fine motor, sensory, social/emotional, speech, etc); chronological ages he reached developmental milestones (You can find a list of developmental milestones online and then put in the age your child reached each one.  I find this one especially helpful when I am overwhelmed with the idea of how far behind we are and don’t want to recount it all again. Plus, it saves so much time in meetings).  
  • List of names and contact info for all medical providers.
  • List of names and contact info for all therapy providers (ABA, speech, PT, OT, etc), number of hours of each service per week, who is funding each service. 
  • Family history form (you can find forms online and fill in your family history info and print out).
If your child has had a number of assessments, it might be helpful to make up an excel spreadsheet with the date of each evaluation, who did it, the measures they used (e.g. WISC, HELP, etc), and a very brief summary of results (e.g. 12 month cognitive level, 16 month gross motor level, 14 months social/emotional, etc.)

We used to have a daily log sheet to keep track of food/liquid intake when we were trying to wean my son off of using a NG tube. Every doctor wanted to know how many ounces we got in, and I was so sleep deprived that I couldn’t count on my own memory. So, the daily log sheet was really helpful. I know other families who have done something similar for other medical issues, like tracking occurrences of seizures and listing the day, time, situation, duration, and how they treated it. 

This may seem like a lot of work, and it is. I started out with a few forms and reports and have built this up over time as my son’s needs and records have changed. I try to think about it in terms of work and time saved, in typing up a list of answers to questions now so that I don’t have to sit and answer them five more times in someone’s office while wondering how much of it my son understands. I also find that there are times when I am much more emotional about this journey than others, and being able to hand someone a list of the ages my son reached certain milestones, rather than go over it verbally, saves me tears and heartache. 

Finding forms/documents

You can find a list of printable forms: (personal info, medical history, family history, diet, growth chart, medical needs, medications, appointments, insurance, care plan, provider list, hospitalizations, immunizations, equipment, rehab/therapy, school) at:

I didn’t know these were even available at first and made my own, and other sources may be available.  Now, I try to search for a document that is similar to what I need, and adapt it for my purposes. 

Suggested Materials
  • Heavy duty binder 3-4” (preferably with insert on cover, make a page with your child’s name and your contact info in case the binder is lost). You may be shocked at the cost of the super heavy duty binders, as I was. I purchased a standard binder first, and the cover and the rings broke within a few months because it gets used often and travels. So, I bit the bullet and bought the $15-20 version, and I have had it for 2 years. 
  • Three-hole punch.
  • Dividers with tabs. Label sections in the way that works best for you and your child’s needs -- I have sections for contact info for: 
    • All medical/therapy providers
    • Medical reports
    • Developmental reports
    • Lab results
    • Growth chart
    • Immunization records
    • Insurance numbers (ID#, phone numbers, etc)
    • Hospital discharge summaries/surgical reports
    • Background (includes family history, brief medical/developmental summary)
    • Questions (I have a sheet for each specialist and write in questions as I think of them so they are handy for the next visit).
  • Plastic sheet protectors. Use these to protect sheets you will be taking in and out a lot, like insurance information. I also put blank paper in them and tape all the business cards of doctors and providers on them so I always have the contact info -- I tried to type up all the business card info at first, but it was too overwhelming. So, now I have them in plastic taped to paper. 
  • A zippered bag that attaches to the binder rings, for storing pens, pencils, Post-Its, and Reinforcers.
  • Post-It notes. I use them to label documents during the doctor office and other meetings, then  stick those documents in the front pocket of the binder. That way I don’t forget what the documents are and what I need to do with them.
  • If you can manage it, an all-in-one copy, fax, and scanner (mine was $50 and is worth its weight in gold).

Using the Binder

When I make an appointment for my son, I always ask if they have paperwork that needs to be completed. They usually answer with the “come in 15 minutes before your appointment, and we will have you do it then,” to which I reply that I have to do it in advance and bring it in or my son will go ballistic. I am usually able to explain that he is afraid of doctors and does better when I can attend to him. Getting their forms helps me to prepare for the meeting, fill them out, and I can also ask them for permission to fax over some of my forms with background info that hopefully the provider will review in advance.

It is also very helpful to remind the office when you arrive that you sent in their paperwork and some background info for the doctor/specialist to review so that hopefully they read them before they come into the room if they haven’t already done so. If they don’t, when they start asking questions that are answered by your forms, you can continue to refer them to those forms. Sometimes it works and sometimes it doesn’t. If they “lost” your forms, you have the originals in your binder and can whip them out and ask them to make a copy.

Most of the time, specialists are grateful that you are thorough and have provided them written details.  If they are not, this may be helpful in your evaluation of whether or not you want to work with this person. I often ask if they would like me to email the documents as well because sometimes they appreciate being able to cut and paste your info when they are writing their reports.

Some people may feel that the specialist should do all the work, but I look at it as a way of avoiding having more errors in my son’s reports. Before I started using the special needs binder in this way, we would spend an entire office visit just going through birth history and medical problems and not ever get to the developmental issues I wanted to address -- and then we would have to come back and have another visit.  If the binder works, the result is that the provider/specialist knows my son's history, and we get to the current issues much more quickly and the whole visit is faster and smoother.

Providers often ask to have families sign release of information forms so that they can request records from your providers. I typically just pull out the relevant reports and ask them to make a copy of them.  I do this for a couple of reasons:
  1. To ensure they have all the info they need to understand my son, and
  2. I don’t always want certain professionals to be able to access my son’s other records.  
I think this is particularly important with agencies who fund services. This leaves me in control of who gets what. I do sign releases for professionals with whom I feel very comfortable and who I want to be able to speak candidly with each other. 

Always get the provider’s business card and add that to your contact info in your binder. Even if you never plan to see them again, if someone else asks you who you saw for evaluation “X,” you will be able to find the info. This card also gives you the provider's contact info for use for health care reimbursement filing and a fax number to use to contact them if they are not easy to reach by phone and will not let you email them. Many providers are refusing to use email because of privacy concerns. One way I deal with this is to say that I will not use my son’s name or identifying information but will only email requests such as, “Can you please remind me who you recommended regarding assessment of gross motor needs?” 

When I am at the office, I take all the forms and documents that the provider gives me and put them in the front pocket of the binder. When I get home, I:
  • Go through all the documents the provider gave me.
  • Toss what I know I will never need (like the 1000th copy of my HIPAA rights).
  • Label the things I want to keep but don’t have time to deal with right now (ex. “file in developmental reports").
  • Make a list of notes and questions for that provider and other providers that came out of that visit.  
This is my To Do list for when I have a spare minute.

When I get reports in the mail, I think about any other providers who I would want to have that info and use my fabulous fax machine to send it out immediately. I then three hole punch and file in chronological order in the appropriate section: PT reports in developmental reports, blood tests in lab reports, report from the doctor visits in medical reports, etc.

I am passing along the approaches that have been working for me. I hope they are helpful.

Monday, September 13, 2010

Moving Day

Transitioning to a group home

Laura Shumaker

My son 22 year old son Matthew and I were cruising our neighborhood for garage sales early one November morning, and we weren’t having a lot of luck. We needed to find furniture for the apartment that he would be moving into the following weekend.

Matthew has autism, and would be part of a Supported Living arrangement that we had designed with the help of our regional department of developmental services and Camphill Communities in Soquel, California.

“Supported Living Services (SLS) consist of a broad range of services to adults with developmental disabilities,” said Mary, who had been Matthew’s social worker since middle school.

“With a supported living program,” Mary said, “Matthew will be able to exercise meaningful choice and control in his life, but with enough support to help him achieve his long term goals.”

“How long term is “long term?” I asked.

“The services are offered for as long and as often as needed, with the flexibility required to meet a persons' changing needs over time.”

Matthew told Mary that he would need to be a gardener and a landscaper, and that he’d need a girl friend, as well.


Our family had become connected to Camphill, a worldwide organization with nurturing communities for the developmentally disabled, when Matthew was a teenager and we were desperate to place him in their residential school in Pennsylvania.

It was the last thing we thought we would ever do.

While painfully aware of his disability, Matthew has always wanted to a regular guy like his two younger brothers. He didn’t just want to be a regular guy, actually, but the guy -- the poisonous plant and weed expert, and the lawn care authority of our northern California community. He was often seen at our local hardware store with his large hands wrapped around a bottle of weed killer, studying the label earnestly, and he’d approach strangers with warnings about deadly nightshade, oleander, and water hemlock.

But just a few days into his 16th year, Matthew decided that he should drive a car like a regular guy and drove my car through a wall in our garage. There were other close calls. One day during his freshman year at our local high school, he observed a guy pushing his girlfriend flirtatiously and then tapping her on the head. When Matthew tried the same move with too much force, I was summoned to his school where he was crying in the principal’s office. “Joe did it to Sue, and she liked it!”

Just when we thought things were calming down following the incident at school, a letter arrived from an attorney asking us to contact him about the bicycle accident involving Matthew. It turned out that while riding his bike, Matthew had collided with a young boy on his bike the month before.

“Matthew? What’s this about a bike accident?”

“Who told you?”

“Someone sent me a letter. Was the boy you bumped into hurt?”

“Pretty much”

Dear God.

“Was he bleeding?”

“Probably. Am I in trouble?”

It became clear that Matthew was no longer safe in the community where he had grown up, and his impulsive actions were putting others in peril. He needed more supervision, more than we or the local school could provide. We were grateful to find Camphill, and were excited about the prospect of Matthew being a part of their community near our home in Northern California when he was an adult.

Now, Matthew would be the first to take part in Camphill California’s supported living program and would be living in an apartment near the community with a “roommate” hired by the Camphill program, one who could assist Matthew with daily living activities, personal financial affairs, and help involve him community life.

Matthew would also be involved in a day program that would provide vocational training, social skills workshops, recreation and other supports.

Putting the program together had taken months, and had been stalled by waiting periods, misplaced paperwork and red tape tangled beyond recognition. While we waited for the program to come together, Matthew felt unsettled and lost without a routine he could count on. He lived at home and was lonely, so I hired “friends” that he could hand out with. Finally, the program gelled, and move in day was December 1, 2008.

“I’m getting tired of all this driving,” Matthew whined after 45 minutes of garage sales with nothing but knick knacks. Just as we turned the corner to head home, Matthew yelled, “STOP! LOOK! I see something good.”

It was a large green sofa sitting cockeyed at the end of a long driveway with a large sign on it.

“Look!” Matthew gasped, “It’s free!”

Matthew jumped out of the car before I could park it and sat on the sofa with a big grin. It seemed to be in good shape, except for a small tear on the arm. Just then, a grandfatherly type walked out and shook my hand.

“Will you take this off my hands?” he asked. “I’m moving to a smaller place and it just won’t fit.”

I offered to pay for the sofa, but he joked that he would pay me if I took it. He even offered to lend me is truck to take it away. I introduced the kind donor to Matthew who was still sitting on the sofa with a goofy grin.

“Guess what?” Matthew said. “I’m moving too. Into my own apartment. That’s what guys my age do.”

As we loaded the sofa into the truck, I thought about the day I moved into my first apartment. I was about Matthew’s age and I felt so grown up-so liberated. I remember my mother’s tearful send off when I drove away in the moving truck with my roommates. I also remember stopping home the next weekend with a load of laundry where my mother greeting me with a hug and a smile.

I knew that Matthew would continue to need a lot of ongoing support from me, especially in the beginning of his new adventure.

But as he sat grinning on his sofa on that November morning, just a regular guy getting ready to set up his first place, I decided to worry about that part later.

Friday, September 10, 2010

Autism Is Not Invisible Anymore

Lou Tecpanecatl

Christmas is supposed to mean a day of relaxation and family meals. But last year, we decided to visit my parents in Ohio, and we booked a flight on Christmas Day.

We knew in advance that flying with our older son, Diego, was going to be stressful because he might feel the need to get out of his seat to walk around and we were not sure how he would handle the airport crowd. We arrived well in advance of our departure in order to check our luggage and to make sure the kids had a chance to eat.

Things were going relatively well until we got to the security checkpoint. I was in charge of keeping Diego from getting out of line and running somewhere else. My wife and I frantically unloaded the stroller and removed the baby's jacket and shoes (he was six months old at the time, and this seems ridiculous to me but we were told to remove his shoes as well) and threw all our stuff into the bins. I collapsed the stroller and quickly put that up so it could go thru the x-ray machine.

I knew I needed to hurry in order to prevent a major meltdown but I already felt the control we had over the situation fading fast. Our nemesis that morning, as we had anticipated, was the metal detector. Up first was my wife, who went through holding the baby. That left Diego standing by himself and waiting for one of us to help him, as he was unsure what to do next. I cursed under my breath as I took seconds we did not have getting that stroller up on the conveyor belt.

My wife, not realizing I was delayed, turned to see me walking up to help Diego. The security officer insisted that our son must pass through the metal detector on his own. We tried to explain that Diego was unable to follow the command because he is mostly non-verbal and needs our assistance, and that he was already visibly upset at the shoe removal process and the entire airport scene in general.

So what did Diego do? He threw himself on the floor in front of the metal detector and screamed and cried. Miraculously, this forced the guard to realize that, on second thought, yes his parents probably should help him through since we were holding up the angry mob wanting to catch their flights. One guy in line decided to run past and asked, “Do you mind if I go ahead?” Did he think I was going to try and stop him and cause an even bigger scene?

After a few failed attempts we somehow managed to help Diego through, collect our things and proceed to the gate. Things didn’t necessarily calm down when we arrived at the departing gate. I imagine it was all that wide open space calling his name because as we wait to board the plane, our son refused to do anything but run from gate to gate, pausing every now and then to make sure I was following right behind him.

In August of 2008, Diego was diagnosed with an Autism Spectrum Disorder. Along the way I have noticed the stares directed at my son when he is having a tantrum in a public setting, like the one he had at the airport metal detector. I imagine that the people who look at us with impatience believe my wife and I are bad parents, and that our son's behavior is a direct reflection of our failure to properly discipline our child. What they do not know: That my son has an extremely hard time transitioning from one activity to the next. They also don't know that at age three he lost his voice for a period of three weeks because he developed calluses on his vocal cords.

Since Diego struggles with a significant speech delay, and has always had trouble expressing his wants and needs, he screams out in frustration. At age three, after repeated bouts of yelling, he began to lose his voice. The throat specialist we visited, who spoke to us without even realizing the irony of his comments, told us we should try and curtail his screaming. I practically fell off the chair. What did he think we were trying to do? We are constantly trying to find ways to help our son improve his communicative skills so he does not have to yell.

Mid-tantrum, we are doing our best to handle the situation in order to prevent any further escalation of anger and screaming. To turn our focus away from him when he is the most vulnerable is not going to diffuse the situation. And if I allow myself to be overcome with anger at other peoples' lack of understanding about autism and how it affects my son, then I am not concentrating on him and his needs at that time. Afterwards, when we he has calmed down and we return home, or during other quiet times, I look back and think about how our son’s actions were perceived by others around him.  The looks have become more frequent as my son has gotten older; he is now four years old but is big for his age.  I fear that as he matures and his behavioral issues continue people will become even less tolerant of any stimming activity or tantrums
I have often heard autism described as an ‘invisible’ disability. I certainly understand the idea behind that description, but it is not a concept I can actually embrace. It is not invisible to me because my family experiences autism on a daily basis. For me it is everywhere, and I’m sure there are many other families who feel the same way. Autism is a disorder that has prevented my son from being able to tell us when he is sick, and causes him to shut down if he is over-stimulated. Yet, for the majority of the population someone is only identified as ‘disabled’ if they are confined to a wheelchair, or if their disability is noticeable upon first glance. It seems to me most people need to be able to identify the ‘difference,' otherwise they are confused as how they should react.

Many people in this country may never have any interaction with a developmentally-disabled individual. Their view of autism may be seen as someone else’s struggle, as a small segment of the population being helped along the way by their parents and a team of therapists and teachers.  However, as many of you already know, the number of children being diagnosed with autism is increasing, and more and more people will be forced to deal with autism as it begins to affect their own family and friends.

This is what makes autism awareness so important. Other people need to be able to recognize the early signs of autism and to also create a better overall understanding of the disorder. Most people know about cancer, AIDS, diabetes and other serious medical conditions, but how many people who are not directly affected by autism know much about it? Not enough. That has to change.


A version of this essay was originally published at