Be wary of snake-oil

First let me say that I am sorry for not writing as often. It's the end of the school semester and as a teacher I have been very busy. I hope to get back to a daily story soon. Thanks for staying with me.

Now on to the next topic - Countering the snake-oil sales for autism treatments with your own expertise.

How do you treat autism? There are so many treatments out there that it’s hard to tell which ones are snake oil and which ones may do some good. All the drugs have nasty side effects and they don’t treat autism – just symptoms. I personally can’t give Matt drugs. I worry they could make him ill in other areas and I just am not willing to risk his overall health on a “maybe”. I have looked at most of the treatments online and notice they all have a budget-killing price tag and most are preying on the fears and confusion of parents. The majority of these treatments have not been tested – making the autistic child a guinea pig. They have no real research to back them – yet many claim they have and are hoping you won’t try finding the non-existent study. I’m not willing to try them. It feels like throwing money into the wind – for hope of a cure. Worse yet, it feels like society is telling me my son is unacceptable for who he is. That in itself is unacceptable to me.

Autism has no cure. The best thing I did was accept that simple reality. Once accepted, I could focus on all the things I wanted for my son that could make his life more enjoyable and help him reach his full potential. It starts with becoming an expert on your own autistic child. How does one become an expert? Simply be the best parent you can be and the title of expert will soon be yours.

I am not an expert in the treatment arena or even in autism as a whole. I am an expert on Matt and Matt’s autism. This is what I recommend to others. Know your child – be an expert on your child’s autism. Spend lots of time observing, playing, interacting and get your child to speech therapy early on.

Once you have accepted that autism has no cure you enter the “expert-in-training” phase. Once you are the expert of your own child with autism then you can more readily decide what steps you wish to take to advance areas that your child needs help with. I was just like you - overwhelmed at first, trying to decide what steps to take and how to get things done that could improve the life of my son. It was no easy task – it still isn’t. Speech was my main concern and once that was in the works I could focus on several other behaviors and problem areas. In order to do that, I needed to know my son better than anyone. That is where I broke ranks with the medical world.

I watched Matt, I listen to Matt, I used trial and error to find ways to help Matt, and I never gave up. The opinions of doctors, therapists and other professionals were weighed against what I knew about Matt. Unbelievably, most of what they “knew” – and I’m talking an overwhelming majority here – was wrong.

How do I know? I know because I am an expert on Matt. I watch. Actually, I’m always watching. I call it my continual observational phase of being an expert. It’s “mom” mode to the extreme. I look for facial expressions, body language - even his gait when we are walking tells me volumes about what he is feeling. I watch his reactions to new people and situations and to people he knows and situations that are routine. I watch for signs of discomfort and pain. I watch.

When he was a young child in a regular classroom there were days when he came home from school depressed or anxious. I talked with teachers and aides. If I couldn’t figure out the problem, then I went to school and went to each class – as an observer. I always figured it out. Sometimes it took a great deal of perseverance to do that. In the end, it was exactly what was needed.

I also listen. I listen for tell-tale signs of confusion, anger, depression, and joy. I listen to him converse with himself in his room (Matt likes to think aloud – a lot) and I listen to him sing. I listen to the tone of his voice and the emotional inflections injected into his speech. I listen.

I use trial and error to find out how to conquer the task at hand – what ever it may be. Most of the time I happen to get it right – probably because I watch and listen. So some things work beautifully. Others, well, not so great. It’s all a matter of trial and error. I learn as Matt learns. I move forward as Matt moves forward. If something doesn’t help to move him forward then I need to try a different route and I make sure that Matt does not enter a static phase. I don’t want him to get too set in his ways or refuse to try something new - that would be a disaster. As long as Matt continues to grow, both emotionally and socially, then I know we are on the right road.

How do I know he keeps improving when the advances are so small as to not be noticed by anyone else? I know because I am an expert on Matt. I’m an expert because I watch and I listen. I write down dates when something new has been observed and I celebrate even the smallest of victories. It makes his progress memorable.

So, be an expert on your child and their specific form of autism. Be empowered. Be wary of snake-oil treatments and medications and choose your path cautiously. Most importantly, accept your child for who they are – autistic or not.

Cartoons Rule!

Here I am in the den trying to think of something to write about that I haven’t already covered. I have writer’s block – such torture. As I sit and ponder I hear the sounds of hardy laughter emanating from Matt’s room.

Matt is watching Bugs Bunny – the new DVD he just bought. The DVD is a collection of the classics and Matt grew up on the classics. Bugs Bunny and all his friends, the familiar theme songs and character voices – what a blast from the past. Matt has been steadily laughing now for 5 minutes straight. I take a moment to listen – ah, Road Runner and Wiley Coyote. No wonder he’s laughing so hard.

Cartoons have always been something I enjoy and I started my kids out early on the antics of such characters as Tom and Jerry, Scooby-do, The Flintstones (I know every episode by heart), and of course, Bugs Bunny. Matt has found cartoons – especially these silly ones from the past – to be the most enjoyable too. He has openly laughed while watching since he was just a toddler. There were times in the car that Matt would burst out laughing and we would all look at each other quizzically, “What’s so funny?” we wondered. I had to wait until he could speak to find out the answer to that question – Road Runner and Wiley Coyote, Bugs Bunny or some other cartoon. Yep, all those times he would burst out laughing, Matt had actually been replaying cartoons. Matt was watching these reruns in his mind and laughing at all the right moments. If you asked him “What’s so funny?” he could describe the entire scene to you, complete with any road-signs poor Road Runner had to read, or Bugs Bunny or Elmer Fudd held in their hands.

Holidays and Birthdays always brought VCR tapes of classic cartoons from the grandparents. Matt literally wore out each tape (and 2 VCRs). Each replay brought hardy laughter and memorized speech – which was fine with me. I know, I know . . . I should have modified his behavior – according to all those experts who have no autistic child of their own. According to them, I was supposed to try and curb his desire for routines and “strange” behaviors. But I must confess, I liked it (gasp!). I loved hearing the joy. I loved seeing the smile. Why in the world would I break his heart over something as trivial as watching cartoons? So I let Matt enjoy his cartoons and his movies over and over (and over and over) until the tape or the VCR just couldn’t play anymore. And Matt stayed happy and openly displayed this most precious of emotions. Did it ever do any real harm? Well, I guess if you counted how many people thought they would lose their mind after hearing the same cartoon 8-10 times in a row – but heck, they’re family, so they just accepted it and suffered.

I have another confession; I still love cartoons. I haven’t watched any of the newer ones. They are not the same. The plots are too serious or they are just not goofy enough to suit my sense of humor. Matt understands – he likes goofy too.

So as I sit in the den and listen to his laughter – yep, still going on – I think about how much joy this child carries with him everyday. He laughs so readily, he smiles and jokes so easily. Hearing the sounds of joy fill my house I am glad that I never took away his desire to replay tapes. I survived, my family survived and Matt grew up with laughter and joy. In the end, the only thing that really matters is that my son is happy.

From all indications, he is enjoying his new DVD immensely. I sit and ponder on the teaching value of such silly animations. The facial expressions are really obvious for each character – you definitely know what they are thinking. A Daffey Duck with a face full of buck-shot from Elmer clearly displays disgust, loathing, and shock. A Road Runner looking at a bowl of seed tainted with explosives clearly shows intelligence and a “yeah, right . . . “ Matt laughs at these expressions because he can read them clearly. He could watch the facial expressions of animated characters long before he could stand to look at a human face. He was safe with the animations – and he learned facial expressions relate to human emotions. He also picked up a wonderful sense of humor and an easy laugh – 2 very endearing traits. So, did they teach Matt anything? Of course! Every exposure to cartoons taught something.

Children learn through interacting with their environment. What type of environment we choose to expose them to is up to us. An autistic child learns the same way in this regard – their environment is everything. Watching the classics (cartoons)? Well, they're really just another minor player in the entire scheme of things, but vastly important to Matt experiencing joy on command. Bad day? Turn-on the cartoons and watch the bad times slip away.

As I finish writing I hear the whistling sound of a bomb dropping on Wiley Coyote and a very hardy laugh burst from Matt. Yep, cartoons rule!

Mmmmm . . .

Thursdays are pizza day around our house. Matt really looks forward to his Little Caesar’s, so much so that most of time he opens the hot box and snatches out a slice on the ride home. This past week he did just that and while chewing on that first bite, added some yummy sounds, “Mmmmmm”. It was great to hear the sounds of pure pleasure emanating from the back seat.

I can’t tell you when he first started doing that – making yummy sounds – but he was a very small boy, probably 3-4 years old. Matt would almost hum during each meal; take a bite – chew – hum - swallow, take another bite – chew – hum - swallow. We always knew when he approved of the menu.

One of the signs of autism is being a very picky eater. Matt would rather starve to death then put something in his mouth he was unsure of. It seems as though it took forever for him to just try pizza, or try a hamburger. I packed Matt’s lunch for school on days I knew the menu lacked any items he would touch. If there were at least one item on the menu, then I wanted him to buy his lunch, hoping he would be hungry enough to try something else on the plate. Much to my surprise, this actually worked. One day the note from Matt’s aide simply stated “Matt ate a hamburger today!” and from that day on he ate hamburgers – ketchup only – from any restaurant we took him to. His food list started out small – just 5 and is now up to about 12-14 (which is amazing!). He will even try a new item on occasion if it smells OK. For example, we once bought a layer cake with white frosting, something we know Matt likes, only to find out that it wasn’t a white cake – it was yellow (gasp!). Matt took one look at it and frowned in disapproval. “It’s pretty good, Matt, you should taste it . . .” I suggested. To my surprise he did and agreed to have a small piece – a very small piece. He ate that one piece of cake, but only that one. He wouldn’t touch another slice of that same strange-looking, yellow cake. One odd colored piece was all he could stand.

Matt eats finger-foods. He love’s hotdogs, hamburgers and pizza - the “All-American” menu. Matt will take his hamburger and balance it on the tips of his fingers, as if to put it on a pedestal. Maybe he does this so he can admire the shape or see all sides by simply rotating the wrist. Regardless of why he does it, the sheer dexterity to even eat a burger this way always astounds me. He will eat some vegetables; peas, corn, broccoli (yes, can you believe it – broccoli?) and potatoes – but only if they are French fries. As for fruit? Grapes – that’s it. He likes cookies – but only Oreo’s and chocolate chip (not home made) and other sweets – like cupcakes, and cake- but only white or chocolate – and don’t go trying to sneak in some coconut frosting – yuk!

Each meal is pretty similar to the last meal. We jumble-up the combination sometimes, but let’s face it, they are all about the same. When he was little each meal brought delight and Mmmmm. As he grew older the sounds of “yum!” grew fewer and further apart. It’s been quite a while since we heard the sounds of pure bliss at dinner time. Then last Thursday we heard the familiar sounds as we drove home. Matt was leaning back, his eyes closed and a half-eaten slice of pizza perched precariously on his fingertips. “Mmmmmmm” the sound softly rising out of him as he chewed. His lips smacked loudly. He took another bite and again he hummed.

And all was right with the world.

Quirks in Behavior

Have you noticed that autism has started to become popular? There are people who have decided that they must be slightly autistic. It’s no wonder. The autism spectrum is vast and the behaviors are so varied that now everyone can look at themselves and say, “Hey, I do that! I must be autistic!” I hate to put a damper on your insight, but unfortunately, you are most likely just . . . neurotypical (normal-brained).

Increasing autism awareness is a good thing. We want everyone to know what autism is and the challenges that come with having that particular diagnosis. The awareness campaign has also increased the number of adults who now believe that they were autistic. First of all, “were” doesn’t fit with autism. You are either autistic or you are not – it doesn’t magically go away because you grow up. Second, everyone has personality and behavior quirks – everybody. A few strange behaviors do not indicate a life-long communication disorder.

The increased awareness coupled with the epidemic in new cases has also made autism the new topic around the water cooler, TV specials and news stories. Most individuals know what autism is and almost everyone now knows someone who is autistic. It’s only logical that people would reflect upon their own special quirks and come to the conclusion that they themselves have some autistic traits. A few traits do not make it autism. Am I autistic? Gosh, let’s see… I like to be away from people when I am not working. I am a hermit who lives in the woods. I like my house organized and clean. I like my file cabinets organized, my clothes organized, my pantry organized – basically, I am very organized. I have certain routines every day and when my routine is thrown off I get flustered. I make the bed before I get dressed – always. I check the news on the Internet while I drink my coffee. I need everything put in its place. I focus my intelligence on certain topics – all else is trivia. With all these strange behaviors I must be slightly autistic, right?

Wrong - I am just another neurotypical human being. Over the years Tom and I have joked about this more than once. If I get on him about tossing stuff down and not putting it away, I look at him and smile, “Humor me, it’s just my autism coming out”, but it’s all in fun. I don’t have autism – I have quirks.

Everyone has personality quirks - after all we are not a species of clones. To assume that any of these behaviors suggests autism is ridiculous. Yet, people scan history trying to find any famous individual with a certain set of quirks so they can claim them to be autistic. Do you know a truly autistic person? Chances are if you are reading this then the answer is “yes”. Next question; how well do you know them? If it’s your child and they are over the age of 5, then you have a pretty good idea of what autism is really all about. If you have or know a younger child, I am simply suggesting you may have less experience and therefore may be a bit more mystified by the whole autism-thing, so please don’t take offense. Those first few years are overwhelming and parents are in the throws of behavior modification themselves. I am sure most new parents will agree that raising an autistic child is not the same as raising a neurotypical one. After several years of learning to see the world as an autistic child sees it you come to know exactly what having autism really means. It’s hard to explain it to people without reverting to the common phrases associated with it – a “communication and social interaction disorder” just doesn’t fully describe it, does it?

I read last night that some famous people are now spreading rumors that they used to be autistic or have a mild case – as if it’s the flu. PLEASE! Quit trying to underscore the severity of the current pandemic. Anyone who really, really knows an autistic person is laughing at you! We know what a diagnosis of autism means. We know it is more than just a “communication and social interaction disorder”. We know what it looks like and how it affects every aspect of the individual’s life. We know.

So Courtney Love, chances are you are an autism-wanna-be. Just another normal person with some personality quirks that thinks autism is just a list of strange behaviors. My suggestion to you, Courtney, is to go ask John Travolta or Sylvester Stallone what they think. They both have children with autism and have the inside track on what “autistic” looks like. Better yet, ask Temple Grandin. I am sure she would tell you that you are simply neurotypical – sorry.

Over the years I have learned so much from my son. I now look at the world in a whole new way. Having an autistic son has enriched my life and made me a better mother, a better teacher, and a better person. Don’t let anyone minimize the accomplishments of the autistic person in your life by allowing them to claim that they too are autistic – just a mild case of course. No they are not – they are unfortunately, normal – just another neurotypical person with a list of personality quirks wanting some attention.

An autistic person would never seek attention that way – and they would never see their own unique behaviors as quirks.

Panic - to the point of near drowning

This is a hard story to write. It’s the story of the day Matt almost drowned. To be truthful, I could have lost more than one child that day, and I could have drowned too.

How old was Matt? I don’t recall. He was old enough to be fully grown, but young enough to where all the kids were in high school and that suggests he was about 13-14 years old. Matt loves the water but hates getting his face wet - unless of course he is wearing a face-mask or goggles. Whenever we were on vacation, we made sure to bring along his goggles and usually a snorkel too. With a face mask, Matt could swim and play in the deep end of a pool without a second thought. He never jumped in – always preferring to ease into the water slowly, taking the rungs of pool ladder one at a time. The other kids would run and leap or dive right in – but not Matt. Once in the water he would drop an item – usually a coin – and then dive under the water and retrieve it from the bottom. He could do this for hours, over and over. The other kids would play this game with him and he loved the competition. We could get him to play other games in the pool as well, but he had to have on the mask if water was going to be splashed in his direction or an under water attack was foreseen.

We also liked to take the kids fishing. Matt was not interested in the fishing part but enjoyed the trips to the river. He spent most of his time tossing rocks and calculating trajectories of the stones so that they would make just the right sound when they hit the water. He wasn’t fond of camping – staying overnight in a dark place where the bugs roamed free and the ground was cold and hard was not his thing. He always slept in our tent with a flashlight burning all night. I was always very proud of him for allowing us to take him to the woods without too much of a fight.

One weekend we decided to go camping and we brought our canoe – a massively long canoe that could fit the 6 of us. We chose our spot on the banks of the New River between Buck Dam and Byllesby Dam. We had to hike through the woods with our canoe, our tents, back-packs and fishing gear to get to just the right sandy area. It was a beautiful sunny weekend with a forecast for continued sun and temperatures in the 90s. Taking children fishing is different than actually going fishing. I spent all of my fishing time untangling lines, putting on new line and hooks and squishing worms onto hooks. I can’t recall if I ever had the chance to actually cast my own line even once. The kids grew tired of fishing, which is understandable since they kept casting into the tree branches and after several hours of “fishing” we decided to take out the canoe. The temperature was climbing close to 92 degrees and the water looked more and more inviting.

There are many islands in the New River, small bits of land that we felt the need to explore. Each person in the canoe had a life jacket. The kids hated wearing them, heck, I hated wearing a life jacket too, but they are a necessity (and the law). The New River has strong under-currents in several areas. Anyone falling into the water near one of these currents could be swept under in a matter of seconds. Every summer there are reports of someone falling into the water, their bodies found days later much further down stream. We explained this to the troops and even though they knew why the jackets were required they protested. The protests were immediately countered with the rule that if they wanted to ride in the canoe then they had to wear a life jacket. Each child reluctantly put on a vest.

We paddled over to a set of the islands that were close together. A small rock bed connected the two islands and a trickle of river water flowed over the stones. We beached the canoe and everyone scrambled out – ripping off their vests and kicking off their shoes. Everyone was drawn to explore the rock bed with its small stream of cool water. We soaked our feet and it felt so good that we sat down in the water. We slid from one rock to the next, enjoying the coolness of the water on such a hot day. The older boys waded further away followed by Sarah and Matt. They headed for the point of the rock bed that connected to the river. “Don’t go too far!” I yelled. They kept going. “You’re too far ahead!” Tom yelled right after. The kids kept going, hardly slowing down. It was a race to see who could wade to the river first. As they moved closer the water got deeper. Christopher was up to his armpits when he finally stopped. Jacob had taken a route closer to the shore line and was about knee deep. Sarah was taking the opposite shore line and was also about knee deep. Matt was headed straight up the middle. Tom and I, both barefoot, traversed the rocks as quickly as we could, but the stones were sharp and our progress was slow.

“Help!” Matt screamed. I quickly looked up to see Matt frantically splashing the water. His head kept going beneath the surface. Matt had hit a deep hole and the water was over his head. Matt could swim, but not without goggles. The water on his face caused him to panic. Both Christopher and Sarah were close to him. “Get him!” I screamed. My heart was racing. I tried to run, but the rocks were so sharp and I couldn’t get there as fast as I needed too. I focused on Matt and the rocks beneath my feet. Step, step, step, look up at Matt, step, step, step. I was moving as fast as I could, but I was moving too slow. Tom was closer to the bank and was moving much quicker, but even he was not fast enough. Christopher, Jacob and Sarah tried to get near Matt, and Christopher arrived first. Matt grabbed him and pulled him under. Matt was trying to use Christopher as a ladder to climb out and he was strong. I held my breath – where was Christopher? Christopher managed to get away, and burst through the water coughing and choking. “Sarah! Stay back – don’t let him pull you under!” “Try to get behind him!” Conflicting commands were being shouted from both Tom and I.

My progress quickened when I hit deeper water and could swim. Tom was almost directly across from Matt by then. I came up behind Matt and my arms immediately went around his body and wedged under his arms. He was heavy – so heavy. My legs were losing strength from treading water and we both went under. “I will not let go, I will not let go, If Matt goes under, then I will too, I will not let go” the thought repeated itself over and over in my mind. I kicked as hard as I could and we reached the surface. Matt took a deep breath in between his frantic sobs. “I’ve got you, Matt, and I won’t let go” I said directly into his right ear. “Calm down, I have you.” I said as sternly as I could. His arms were still smacking the water but his body relaxed a small bit - enough for me to tighten my grip. I was still treading and my legs began to feel like stone. Tom was shoulder-deep nearer the water’s edge and was leaning out toward us. “Push him to me” he called. I was sinking, my energy sapped. We were only a few seconds away from going under for the last time. I knew my energy would be completely drained within minutes – I gripped Matt tighter. I had a white-knuckle grip on my son and the idea of letting go enough to push him went against my instincts to hold him as tight as possible. I had to convince myself to do what Tom requested. I remember forcing myself to think, “If I am to push him to safety, then I will have to let go”.

It was a leap of faith that allowed me to push Matt away. It was my faith in Tom. I knew Tom would catch him. I knew he dive in if something went wrong, if I couldn’t push him hard enough to make it to where Tom stood, but it was hard to let go. To push Matt such a distance I would need force and the only way to achieve the force was to go under the water and kick to the surface and at the same time pushing my son up and away from my body. My legs were heavy, I couldn’t feel them anymore – just dead weights hanging from my body, but they were still kicking. My arms were tired, the lock I had made around make seemed to flex every muscle in them and they were burning. I had one shot at this – maybe. I could hear the kids yelling and crying and I could hear Tom repeating his request, “Push Matt to me!” We went under.

I stopped kicking for a fraction of a second and we sank like a rock. As the top of my head began to feel the water I started kicking with all I had left. As we reached the surface I forced my son away from me, the sound of his frantic cries in my head. Tom reached out as far he could and in a flash, grabbed Matt, clutching him by the arm and immediately dragged him in to the rocks with the help of Jacob. My energy was spent and I was going under again. What could have been my last view above the water’s surface was of Matt reaching safety. I relaxed. The water flowed over my head. Without a struggling Matt attached my body I could float and I soon rose to the surface. I stretched out my arms with my last bit of energy and gave one last kick – directly toward Tom. His strong grip reassured me that it was over and he pulled to me shore.

You have heard of traumatic stress syndrome, where a person goes through a traumatic event and replays it over and over in their mind, unable to forget, barely able to move forward in life. I have had this event in the recesses of my mind since that day. I have replayed it a thousand times. I am moving forward with my life, but there are times when this event brings me to tears – like it has today. I think of what could have happened and am chilled to the bone. As time passes I can look back and see that everything fell into place perfectly for the saving of Matt’s life. If Christopher had not attempted to save Matt and give him those few seconds of rest, could Matt have stayed above the surface for me to get to him? If Sarah had not been able to get close enough to reassure Matt, would his panic have caused him to go under? If Jacob had not gone to Tom’s aid, would Tom have been able to pull him to the rocks? When the emergency hit, Tom took one route and I another. Without speaking we worked like a well oiled machine, combining forces perfectly to retrieve Matt from the water’s depth. Tom and I even came together at just the right point near enough to the shore to allow for such a hand-off. And I had just enough strength to get Matt within Tom’s reach. Seconds later and I would have been to the point of exhaustion and Matt and I would have gone under for the last time. We were so fortunate.

It should never have happened. I should never have allowed the kids to remove the vests. I knew Matt couldn’t swim without his goggles, but it never occurred to me to bring them. I feel stupid and ashamed that my lapse of thought could have ended my son’s life. Had it been Christopher, Jacob or Sarah, I still would have held on tightly, resigning to go under with them rather than let go. Of course, none of them would have panicked the way Matt did simply because water touched his face.

Matt needs me to keep him safe – more than any of our other children, because Matt is autistic. It’s a really big job, a very important job. Unfortunately this job has no text book or class work or practice sessions – it’s all on-the-job training. One mistake can have nasty consequences. On that particular day, Matt’s ability to stay calm was completely absent because water had touched his eyes. I knew about this fear and neglected to bring goggles, neglected to make him keep on his vest. I have learned from it and am haunted by it. I know I will live with this shame the rest of my life. Matt, on the other hand, has no memory of this event. He still enjoys the water immensely. Matt swims in the deep end, wades through creeks, plays in the ocean and he does it all without any fear

– as long as he has his goggles.

.

We are all Hokies today

Today is the anniversary of the Virginia Tech (VT) shootings. Students and faculty lost their lives in this campus massacre 3 years ago, April 16, 2007. Matt is a Hookie fan – a really big Hokie fan. I have only been a Hokie fan for a few years, since just before the shooting.

Matt has always loved VT. Since he was old enough to watch a game, see a Hokies t-shirt, and explore the campus. We took all the kids to tech years and years ago when they were all so very young. They raced on the sidewalk paths between buildings and climbed the stairs between monuments, and explored the football stadium. It’s a beautiful campus. The architecture is magnificent. I’m not sure what caught his attention first, the architecture or the sidewalk patterns, but Matt has been hooked ever since that first visit. Every child eventually decided on a favorite team. For Matt, it had to be Virginia Tech. No one else in the family was a Hokie fan, so he wasn't mimicking anyone. He picked the Hokies on his own. Soon everyone knew Matt was a big fan. Each holiday and birthday brought more VT-logo items; key chains, t-shirts, sweatpants, shorts, posters, mugs, glasses, and the list could go on and on. In deciding what color Matt wanted his game room painted, guess which colors he chose? Hokie maroon and orange. The walls may be a boring white but the trim and cabinets are bold maroon and eye-popping orange. Matt matched the colors at Lowe's using only his memory and when we held the paint samples up to his VT throw rug the color match was seamless. Matt even bought a VT couch (maroon and orange with the VT logo on the head rest) to put in his newly painted VT game room.

Toward the end of his last year of high school Matt was invited to tech for a seminar for students with disabilities. He stayed in a dorm, ate at the cafeteria, and shopped at the bookstore. I was with him as his facilitator and got to experience the campus also – and I became a fan. Morning seminars were followed by a long break. Matt would use his break to hunt out a new as- yet- unseen, corner of the campus and draw. His sketches captured details I hadn’t really noticed until then.

Matt could have gone to Virginia Tech as a student. His GPA of 3.85, his school activities, his class standing, all screamed for the admittance. Alas, Matt had not grown socially enough to handle the pranks of other students, the comments from teachers, or even the guidance of the help desk. He had real difficulty starting conversations or joining in, and when nervous, his speech clarity would decrease. It’s been 5 years since then and he has improved in these areas tremendously within that time. Could Matt handle campus life now? Maybe. But although he has improved socially, I feel he would do better with just a bit more practice in the independent thinking -self-esteem department.

If Matt would have gone immediately after high school, and he had stayed for a second year, then he would have been on campus the day of the shootings 3 years ago today. How would have reacted to the sounds, the police, the tears and anguish? As it was, Matt was glued to the TV that day. He continued to watch the news day after day in the wake of the tragedy. He was shaken.

Last year, after the crowds had left campus for the summer break, we took Matt to Virginia Tech. We walked the campus and found the memorial in remembrance of the fallen. We read each of the 32 markers, walking slowly- our heads bowed. The memorial was simple in its construction, perfect in its design. At first, not one of could speak. Matt went off alone to read each stone, and took pictures – lots and lots of pictures. He walked to the street area and looked over the campus grounds as if trying to picture the horrific scene. Tom and I carried on some light conversation, but mostly we were silent too. Matt was reserved and thoughtful.

We spent hours on campus that day. We walked everywhere. We explored all the sports arenas. We reminded ourselves that Tech was still a vibrant first-class school. And we remembered the innocents – students and faculty.

Matt will never forget. This year we are scheduled for our yearly campus trip the weekend after final exams and Matt has been marking off the days on the calendar. During our visit we will again find the memorial and pay our respects. This is - and always has been- Matt’s idea to stroll the campus and pay our respects to the fallen. I believe you call it empathy – one of those elusive emotions that autistic individuals are not suppose to display. I can attest to the falseness of this stereotype. If you need to see empathy in an autistic young man, then meet us there – at the memorial.

Today is the anniversary of a horrific event that hurt us all and especially those who have an intimate tie to VT. Today we all stand in support of our friends on the VT campus and remember. Today we are all Virginia Tech Hokies.

Marching to a Different Drummer

I think it’s in our DNA to love music. I can’t think of anyone who actually doesn’t, can you? Musical taste may vary from person to person, but everyone loves the flowing, rhythmic sounds and melody that is music. Matt is no different.

I started thinking about this aspect of my son this week because Tom got a new cell phone – one with an MP3 player. An MP3 player is a digital music device which allows a person to download music from their computer onto a very small, portable listening device. It has a set of ear buds (tiny receiver buttons that fit snuggly in the ear) that let you hear your favorite songs, no matter where you are, without disturbing anyone else. Anyone with an MP3 can move to the beat of a different drummer.

I have never owned one. When Tom got his phone, his MP3 player was passed down to me. I am a newbie to the world of portable, private, music enjoyment. We like many of the same types of songs and I will not need to load the player with too many additional tunes. I’m pretty excited about it. Now my walks, my yard work, and my chores around the house can be accompanied by a strong beat or sweet melody and it won’t disturb a soul.

Matt has never had an MP3 player either. After some thought about my own good fortune it occurred to me that Matt would probably like an MP3 of his own. I asked Tom to show Matt mine while I was at work to see if he liked it. I suspected he would. Actually, it was a no-brainer – Matt loves music and loves to sing. A personal music devise that he could take with him anywhere is exactly what he craves.

When I returned home from work Tom gave me the details of Matt’s first exposure to the MP3. The player received 2-thumbs up! Matt put it on and sang and danced around the house all afternoon. By 5:00pm, he was ready to go shopping for one of his own. Matt was so hooked on this new-fangled devise that he wore my MP3 all the way to the store and all the way home. He turned up the volume, leaned back in the seat and looked out the window as the music filled his head. Matt was lost in the rhythmic sounds emanating from the tiny discs in his ears. He didn’t sing – just listened.

Matt has always had trouble discerning the lyrics of a song. He can’t quite make them all out and he will pick a word that is close – the word he thinks might be right – to fill in the gaps. Lots of people do this, and it always gives me the giggles. For example, when Matt was singing Tom Petty’s song, “Runnin’ down a dream” he replaced the lyrics with “runnin’ down the drain”. I smiled and gave him the right word, which he gladly accepted. Matt wants to be right- he’s never insulted if you correct him. I guarantee he will never sing “Runnin’ down the drain” again – which, when I think about it, makes me a bit sad.

The ear buds and digital clarity of the MP3 player allows Matt to really hear the words. Matt was silent as he rode in the jeep, fascinated by the clarity of the lyrics. Knowing Matt, he was most likely memorizing the lyrics of as many songs as possible during his time with my MP3. His most autistic characteristic at this time in his life is his continued need for accuracy and precision - in everything. This is what drives him to learn and now he can satisfy this need as it pertains to his music also.

Matt excitedly showed me his new player when I got home. I asked him if he had any music on it yet and he said, “no” in a pleading voice. “You need to write a list of songs you want on it and give it to daddy” I replied. Matt went immediately to his room and began to write. I went to the living room to sit down and not even 5 minutes later Matt reappeared, smiling ear to ear, and handed a 3 page list to Tom - 51 songs with the name of the band and the title of the song by each. Amazing! I know I couldn’t even rattle off 51 songs in that short amount of time, let alone write it all out. Tom went straight to his computer and started loading.

Today we will be hiking another section of the New River Trail and Matt will be wearing his new device. It’s been a long road from the little boy who would put his hand over my mouth when I sang to him. This same little boy use to cringe at loud sounds. Now he finds a great deal of joy in music and amplitude is not issue. Even with the ear plugs in, if you stand anywhere near him you can still hear the song he is listening too.

I am looking very forward to our hike. I’m anticipating a walk in which Tom and I hike – each of us listening to our own music. And Matt? Well, I don’t expect Matt to actually “hike”. To be honest, I expect Matt to dance along the trail and sing his way from point A to point B.

Each of us will be marching to a different drummer. That is exactly how it should be.

Enjoy the Routines

We have certain routines for holidays. The Fourth of July is my favorite. First of all – it’s warm. Any holiday that heralds the glory of summer has to be one of my favorites. Second – we always go to the Salem Fair, a place that holds many great memories of our children growing up. Third - I love fireworks. I always look so forward to Fourth of July.

One of those memories involves 4 small children and 2 broke parents. Raising 4 kids isn’t easy financially. In the beginning we were always struggling to save money. Our first trip to Salem was to simply watch the fireworks – we couldn’t afford the fair. We had an old van back then that smoked terribly when we idled at stop-lights or were trapped in a traffic jam. Our old van held all of us fairly comfortably. I say fairly because it was missing the back bench seat. Jacob and Sarah sat on the first bench seat and Matt and Christopher sat on the floor where the second bench seat should have been. That first trip to Salem to watch the fireworks was a spur-of-the-moment trip. We weren’t sure where we were going or where exactly we would be pulling over to see the fireworks, we just went. We stopped and picked up chicken dinners and drinks and headed for the big city. We drove around awhile and found a factory parking lot that faced the direction of the fireworks, pulled in and awaited night fall. The fireworks were amazing. It turned out we had a front row seat. Matt was especially thrilled. He covered his ears for the “boom” but he was captivated by the patterns the sparkling light made in the night sky – and he was hooked. Each year thereafter we had to go to Salem to see the fireworks on the Fourth of July.

As the years progressed we got better at the finances and soon we were taking the kids to the fair itself for a day of rides and pig-races and taste-testing samples of the latest snack foods. Matt wanted to ride the roller coaster – after all it looked sort of like a train (it had a long winding track) and the track was laid out in various spirals, which I’m sure Matt thought made very cool patterns. He bounced as he waited in line. The roller coaster was one of those kiddie-coasters and only meant for really small children. It didn’t even go very fast. Matt was larger than the other kids that rode with him, but he smiled just as big. He went on a few other rides, but mostly he avoided them. Some were just too scary-looking to attempt. He watched his brothers and sister scamper toward every ride – fearless, and although he wanted to ride too, his fear forced him to be a spectator only. This changed slowly over the years. Each time we went, Matt seemed a bit braver and would attempt a new ride.

Weeks before the holiday each year, Matt would start the countdown on the calendar. Each day he would announce how many days until our annual trip to the Salem Fair. Each year we exposed him to something new. One year we had all the kids enter the art contest. Their pictures were on display for all-the-world to see for the entire week of the fair. Matt won one of those contests years ago and it helped to boost his self esteem tremendously. This was during the same year as his big win at Special Olympics. Man, did he love those blue-ribbons! It was also during a time that Matt was fascinated with weather and especially tornadoes.

In this particular year, Matt had chosen to go on some of the rides that were previously feared – like the giant ferris wheel. This ride towered above all others. Instead of a bench seat it carried gondolas, allowing 6 people to ride together, round and round. It moved slowly and of course it stopped us at the top. The gondola swung back and forth. I hate heights – but love the view, and just kept telling myself, “Don’t look down”. As a result, my eyes focused on the mountains in the background and the dark sky in the direction of our home. Matt was also looking toward home. “Uh oh . . .” he said softly. “Don’t worry, Matt” I said to him, “Those clouds are pretty far away.” Matt kept looking homeward and announced, “I think it’s a supercell.” Supercells are cloud formations that produce tornadoes. He didn’t say it fearfully or even as a possibility – he stated it as fact. We all turned our gaze toward the dark clouds. Matt knew his weather. We looked at each other. Matt was right about such things and we wondered, ‘Was there a tornado near our home?’ The wheel began to turn again and at each stop downward we looked at the clouds. The storm drew closer, but as we watched it move along the mountain ridge we knew we were only going to catch the edge of the storm. It began to rain.

We waited out the storm indoors. This was where the booths were set up to sell various items, where the artwork was displayed, and where “headliner” shows were performed. We walked slowly around to each booth and then stopped to watch one of the shows featuring acrobats. The sun re-emerged and back outdoors we went, straight toward the petting zoo. Matt stood back and watched as we fed the animals. We told him what each animal was and that they wouldn’t bite. Yet, even though he could see we were all enjoying the animals, Matt remained fearful.

The fireworks display was on time. It turned out to be a great day and great evening. Tired and sunburned, we packed up and headed for home. It was late when we returned home – and the house was still standing. We were relieved when we didn’t see any wind damage. The next morning as Tom and I had our coffee and listened to the news we found out that a tornado had touched down just outside of Wytheville and they were showing pictures of the homes damaged by the large hail that preceded the wind. Matt had been right again – it really was a supercell he spotted from the ferris wheel.

The years flew by and the Salem Fair changed. They took away the fireworks display as companies near the fairgrounds began to complain of a fire hazard. This meant we needed a new venue. The town of Wytheville had actually increased their display and it’s close to home. Our new routine is to watch the fireworks in town, but we still go to the Salem Fair during the day. The rides seem smaller and the price tag bigger, but we go because, well, it’s our routine. Matt still tries something new each trip. He did a bull-ride one year and let an artist draw a caricature of him in another year. Just a few years back, Matt attempted to climb the rock wall. He didn’t make it very far and I could see on his face that he intended to conquer this wall within the next few years. We still walk through the petting zoo of small exotic animals at the fair, but now Matt actually hand-feeds the emu. And we still ride the giant ferris wheel to take in the magnificent view.

So, what’s the point of this story?

First – everyone has routines. One of the characteristics of autism is the need or desire for routines. I need certain routines – don’t you? Autism just increases the number of obvious routines, but routines in and of themselves are nothing new – we all have them.

Second – Routines can provide a measuring stick for noting changes in behavior. Matt became more incline to do something new each year – new rides, feeding the animals, sitting for a picture, and climbing the rock wall. These were all significant because it showed he was maturing and his independence was gaining strength.

Third – Connections can be made. Matt connected his knowledge of weather to the cloud formation he witnessed and formulated a conclusion – the tornado. This is the application of knowledge – a crucial step in the road to critical thinking.

Fourth – Routines provide an avenue to work through fear. He knew where we were going and what to expect and could make plans to conquer specific fears as all else was the same. It allowed focus. Matt worked through his fear of fast rides, his fear of crowds, and less fear meant more focus on trying something new.

The only thing hard about routines is getting one started. Once you have it in place you can use it as a tool in teaching the autistic individual. It doesn’t feel like work, and certainly doesn’t feel like teaching, yet a routine may be just what you need. Make a fun routine that you can enjoy every year. I believe strongly that there’s no better classroom than life itself. The trick is to enjoy it.

Maybe you should make it a routine . . .

Future Aspirations

What comes after high school graduation? As parents, we have done our best to prepare our children for adulthood. Yet, it’s hard sometimes to realize they are moving on with their lives. Maybe they’re off to college or maybe they’re busy looking for work that suits them. Maybe they need a little push and maybe they don’t. The truth of the matter is that they are no longer kids – they are young adults.

It can be a difficult time – the old, empty-nest syndrome may sneak in and you get sad. Then again, maybe they can’t seem to get out on their own soon enough – the old, full-house syndrome, and you get frustrated. Regardless of the emotions that swell up from time to time, you navigate the waters of change as best you can. Eventually, you come to realize that your child is truly an adult – and with any luck, they are happy.

We now have 4 adult children. Although each has a new life and new hurdles to jump, my hope for each one is still the same – I want them to be happy with the road they choose. They are all such different people, with different dreams, talents, skills and beliefs, but the differences that separate them, make them who they are – individuals unique to this world. As different as they are from each other, there is a common thread that ties them all – happiness.

Matt is autistic, but that doesn’t mean he’s not happy. Matt is probably the happiest guy I know. He has great self esteem and a wonderful sense of humor. The problem is that his self esteem is very fragile. This is why we must consider his future very, very carefully. Matt walks like he is in charge. He strides. His smile is genuine and his laughter contagious. He is nurtured here, in the same house he grew up in, with his parents. He is safe and can be at ease to be himself. That would change if Matt worked.

Matt could do almost any job that pays minimum wage, but it is just not something we will ever push him to do. Maybe you don’t realize this, but there are some very mean-spirited people in this world - people that make fun or pick on the weak. Matt can’t handle confrontation or verbal assault. He can’t deal with being told he is wrong or that he is inferior. All it would take is one crappy job that has one mean-spirited person and Matt would regress. We would lose years worth of work, years worth of successes, and we would lose the Matt we know. It simply isn’t worth the price.

People still try to talk me into getting Matt into a program for the disabled that will allow him to work and that the work in itself will somehow make him happy – but I think not. Matt is an artist. He thinks of himself as an artist and any job that is not as an artist would hurt him deeply. It would signify failure – and failure is something Matt still can not accept, especially in himself. Matt wants to be an artist and now my goal is to help him in his quest.

He took a photography class at the college and will be enrolled next fall in art. One class at a time seems an awfully slow route, but where’s the deadline here? Tom is venturing into doing photography as a sideline with hopes of having his own studio one day. Matt would fit right in there. He has a talent for seeing things others miss and his photographs are beautiful. He enters art contests on occasion and looks into art schools – but he is afraid – afraid of not understanding, afraid of failing, and this overwhelming fear that he carries with him is why we need to go so slow. Do all autistic children carry fear of failure? I wonder sometimes if others are like him or if this is one of those traits that make him unique. I suppose it doesn’t matter which, as I know what demon he faces and understand his reluctance to jump into anything without testing the waters.

Every child is different. Every autistic child is different. Matt has his own certain qualities that tell me that a job- just have a job - would destroy him. He loves his life – one that reflects his own personality. Autism robbed him of his future once, a long time ago, and we turned that around to where his future is bright again.

Why would I rob him of his future again?

Watch and Listen

Way back in the day, before Matt had speech, people would ask me, “How do you know what Matt wants?” It was a question of curiosity – one which was simple to answer, “I read his body language.” I’ve always been good at. It must be a difficult thing for most people to do, as even my husband, Tom, and my other kids, Christopher, Jacob and Sarah, have never mastered it the way I have. Tom usually comments with, “You’re so good at that,” whenever I notice something or provide something I know Matt needs. I guess it comes with experience and practice, but there must be more to it than that. I’m good at observation, and I’m getting better at deduction. I like watching.

I’m not a social butterfly – like Tom and the kids. Everyone in the family has a gift for being social – everyone that is, except Matt and me. They can start a conversation and keep it going forever. They each have a broad range of knowledge – know a little about almost everything. My knowledge base is more concentrated. I know a lot of information on several key topics, and everything else to me is trivia. I enjoy hearing trivia – but it doesn’t stick. Everyone in the family has a quick humor, which I love, and they all laugh so easily. The “laughing easily” part both Matt and I are pretty good at too. Conversation has always been almost a chore for me, unless of course it is on one of my areas of focus. I enjoy listening and will put in my two-cents here and there when the urge strikes me, but listening to an interaction is more fun. Maybe that’s why I can relate to Matt so well. I watch and listen. Matt watches and listens. We both learn quite a bit about another person without ever saying a word.

In watching Matt I have found he has certain movements that say volumes. A glance at me means he wants my attention. If his hat is on, he’s ready to go. If he walks to the kitchen and does not open the refrigerator door, then he’s lonely and wants to be invited to do what ever it is I’m doing. If he brings his CD to the jeep, then he wants to listen to his music and not mine. If he marks the days off on the calendar when I am near him, then he is counting down to a special event. If he makes it a show to make kool-aid, then he’s telling me he’s out of Mt. Dew. Hovering on the fringe means he’s listening and wants to join in, but needs an invitation. If he packs his art bag, then he wants to go somewhere. They all may seem fairly obvious, and to me they are, but Matt does all of these very subtly. You have to watch for them. Matt’s gestures speak volumes.

His facial expressions alert me to whether he understood or is confused by comments or actions. The other night I was hugging him good-night and said, “Matt, did you know you are the light of my life?” He looked at me as if I had just insulted him, “What!” I recognized that expression immediately. “Do you know what that expression means?” I said, leading him through the process of Q&A that I use so often to make him understand something. “Uh, no!” he replied expectantly. “’Light of my life’ means that you make me feel good. Each night when I get home you smile at me and your smile makes me feel on top of the world. Being my light is a really great thing. Can I call you ‘the light of my life’?” He understood that it was a compliment before I even finished my explanation. He smiled even bigger and gave me a bear-hug. “Yes.” He replied, granting me permission. Last night as I was headed for bed, I gave Matt a hug and said again, “Matt, you are the light of my life”. He smiled, and sweetly replied “Yes” followed by another bear-hug and another great smile. Sometimes I think Matt and I are more alike than anyone might think. We both need the hugs, the reassurance, and the routine exchanges at bedtime to complete our day. We both watch and listen and wait to be invited in. He watches me and reads me too. I know he is watching and I make sure that what I am doing – from movements to facial expressions – is as obvious as possible. I know when he is carrying around a question and most of these are answered before a word is spoken.

When Matt and I would go to the store while Tom was away on contract, Matt would always bring his CD. The first time he brought it he put it in the player as soon as I turned on the jeep. He studied the buttons for a bit then pressed the skip button until he had just the right track. He has his favorite songs and sees no point in listening to the songs in-between. As soon as his song began to play he looked at me. What was it? Was it his eyes? Maybe it was the angle of his head? Was it his body gesture? I really couldn’t say, but I knew he wanted me to listen. Matt knew a few of the words and would blurt them out – looking at me. I knew what he wanted – he wanted to know the lyrics. I began to reiterate the lines as I heard them. I didn’t know this particular song.

I had to listen – and I could feel Matt watching me listen. We replayed the song several times on that first trip to town. Within that time we had figured out several lines and he was singing them with each replay of the song.

Each time we went to the store, Matt brought along his CD. Each time I picked out certain lines and reiterated for him. Each time we returned home, Matt knew more of the song. Eventually Matt knew the entire song. To show how proud he was of his accomplishment, Matt grabbed his CD for our first trip to town upon Tom’s return. He skipped ahead until he found just the right track and then, with a big smile and a loud voice, he sang his heart out, singing each and every word. Tom smiled, listening to his son’s happy voice.

The song? Oh, it was, “I’m a Hard Working Man”, by Brooks and Dunne. It is dear to Matt because he knows how hard his daddy works for him to keep us going in such hard financial times. He picked it out because, well, because he was missing his daddy. He wanted to know the words because the title said it was about a “. . . Hard-working Man”. Matt needed my help to figure out the words so he could sing it for his daddy upon his return.

I got it almost immediately – did you?

The All-Important IEP

An IEP stands for Individual Education Plan. As the name implies, the plan is individualized to meet the needs of a specific person. The IEP designed for Matt would not necessarily be the right one for someone else. IEPs contain the disability, the goals for the year that teachers and other professionals hope to achieve with the student and a way to measure these goals that will demonstrate progress. If a child needs speech therapy – like Matt did - then the IEP would have this listed as one of the services. Under Speech Therapy then, it would include the where, when and how the goals will be met. The where – in the speech therapists office, the when would include the number of meeting per week and how long each meeting would last – 20 minutes 3 times per week. The how shows how the progress in the child’s speech is measured – Matt will speak in sentences at least 4-5 words long 50% of the time.

The IEP meeting is the most important tool a parent has in the education of their child. Several professionals will be there to meet with parents; teacher, paraprofessional, special education teacher, speech therapist, and sometimes the principal of the school. Anyone who will be working with the child should be in attendance. Professionals have their own set way of doing things and a preconceived notion of what each disability looks like. I am going to go out on a limb here and say that the chances of anyone in that room actually having an autistic child of their own is pretty slim. The parents must be there in order for the IEP to be a real, honest-to-goodness plan that truly reflects the best interests of the child.

I have mentioned in my story about Matt’s speech (Speech – A Race Against Time) how the professional speech therapist in the meeting didn’t think Matt even needed speech. If I had not been present, Matt would not have had that service and the likelihood of him being able to speak – ever – would’ve dropped dramatically. I have also written about Matt needing an aide to keep him focused on the class assignments and the lesson and not on the number of strangers in a room, and how the principal of the elementary school tried to take away his aide – what a disastrous day that was for all involved; the teacher, the students and Matt. A parent has to be there, has to attend the IEP in order to have it individualized to the child. It is absolutely, positively, the most important influence you will ever have on your child’s education.

Schools are under-funded across the entire country. School districts are having a very hard time coming up with the funds for special education services and this unfortunately can come into play when deciding what services your child will receive at the school. In order to make sure your child receives the services they need – you need to be there.

Here’s another example of how important a parent’s presence is – Matt’s Transition IEP Meeting. Matt was graduating from the elementary school and moving on to high school. The county did not have a middle school at that time. Elementary school ended with 7th grade. High school started at 8th grade. I had a reputation by then of being a very active participant at IEP meetings. Whereas I used to be someone they thought of as . . .umm, strong-willed, I was now thought of as . . . STRONG-WILLED. One of Matt’s teachers stopped me in the hall weeks before the meeting to ask me if I would be attending. “You are coming, right?” she asked. “Of course” I assured her. “I just wanted to make sure. We’re really going to need you there. They want Matt to go into the Project Mary Program.” She answered.

Oh really? Well – That’s not gonna happen . . .

Meeting day arrived. The conference room was crowded as the transition had to include 2 groups of professionals – one group from the elementary school and one group from the high school. Each group had teachers and a special education teacher. Matt’s paraprofessional from his elementary school was there along with his speech therapist – and there was me, of course.

Everyone agreed on speech – yea! Then, we had to address Matt being in a regular classroom – which he had been from 3rd grade to 7th grade. Why the group from the high school felt he could not deal with the classroom at the high school level was beyond me. They tried desperately to steer me toward putting Matt in “Project Mary” a special needs self-contained classroom that taught life skills. Students in that particular class graduated with Certificates of Attendance – not a diploma.

First, Matt was not in need of a life-skills class. I was already doing that at home.
Second, Matt was intelligent and could learn algebra, biology, civics, English, etc. What possible good could come from missing these subjects?
Third, autism does not mean he couldn’t interact with students. Matt had been interacting socially, albeit minimally, since the 3rd grade.

His continued progress required him to be in a regular classroom – with his aide. I made it very clear that the ultimate goal was a high school diploma, nothing else would suffice. Matt was autistic, yes, but that did not mean he was not capable of learning. He would learn, he would excel, and he would graduate – period. Once they understood my wishes and goals, they saw the need for Matt to have his aide - yea!

Still, the lack of really knowing Matt made the high school group very nervous. They had heard about autism and had preconceived notions about what an autistic child was capable of. The elementary group tried to alleviate their fears, extolling the accomplishments Matt had made thus far in his academic and social abilities, but the high school group was wary. I came to the conclusion that they would just have to adjust as they got to know Matt. They (the high school group) finally saw that I would not sign off until I got Matt what I knew he needed.

It took a lot of assurances by the elementary group to get the high school group to accept that we were not going to do it their way – I wasn’t going to do it their way. Thank you, everyone at Sheffey, for sticking with me at that meeting. You were great!

So, in the fall of 2000, Matt entered high school. He was signed up for regular classes with his aide and he had speech therapy 3 times a week, and he would still take the special education bus to school – all items that were decided upon at the IEP meeting.

Mission accomplished.

The Easter -Egg Hunt

When I was a child Easter meant candy in baskets and Sunday school. I remember the baskets quite well – full of Easter treats and hidden in a secret place. Upon waking my siblings and I would immediately go on the hunt. Each basket had a name and the “rules” were if you found someone else’s basket you were to leave it be, not say a word, and move on. When our children were small I wanted to have the same experience for them. We would buy 4 baskets, fill them with candy, and hide them around the house. After a few years the kids got too good at the hunt and the baskets would be found almost immediately – which is absolutely no fun for the adults. To extend the parental joy we decided to also include an Easter egg hunt.

I took the kids to the Easter egg hunts at church and then at the local outdoor mall. Neither was the experience I was looking for. The church eggs were hand- dyed colored eggs – real ones, hard-boiled. Pretty, but not all that desired by our troop of chocoholics. Matt was very young and spent the sermon under the pew. When it was finally time for the egg hunting to begin Matt was ready to go home. He had difficulty dealing with the noise and commotion of all the excited children and didn't understand what he was suppose to do. The outlet mall had an egg hunt across their vast lawn - the eggs were everywhere. Unfortunately a big brightly-costumed rabbit seem to stalk him. The hundreds of other children snapped up eggs right in front of him – leaving him with maybe 1 or 2 in his basket. Nope, the outlet mall was not the right experience either. After trying the public egg hunts and feeling disappointed we decided it was time to start having one of our own.

Our first family egg hunt was a small affair with only 40 eggs – plastic. Into each egg was placed a small candy treat. We placed the eggs in a bag and kept the bag out of sight until the night before the bug hunt. The night before was always exciting for Tom and me. We would venture outside with flashlights and a bag each of eggs and hide them around the yard. Next, we placed 4 chocolate bunnies on the kitchen table; 3 small and 1 large. The next morning the children were told that the one with the most eggs got the giant chocolate bunny. The kids tore out the door, scurrying this way and that, finding eggs almost immediately. I went with Matt. I took him by the hand and led him to the eggs I had hidden in the most camouflaged of spots. Sometimes they were there, sometimes they weren’t – we had 3 other children all gifted in candy-search techniques. Matt would slowly bend at the waist, pick up the egg and open it, dropping the candy into his basket. “Matt, we need to open the eggs later, keep searching.” I would have to keep pushing him to go faster in order to get more than just a handful of eggs. Matt didn’t win the giant bunny and this upset him tremendously. His tears just about killed us. This was meant to be fun and we had made a serious mistake in making the giant bunny prize a reward for the most eggs – Matt would need years to perfect a search method and increase his speed. We were definitely not doing this right, but we were determined to figure it out.

The next Easter we came up with the “Prize Egg”. All eggs were not created equal. One egg had the words “Prize” written in marker and the child to find that particular egg would get the big bunny. Each of the other kids felt bad about the prior year’s tears and Matt’s broken heart. We talked to them while Matt was busy in his room and asked them for their permission to let Matt find the prize. All agreed – wholeheartedly. The next morning we again released the candy-sleuths to a yard with even more eggs – 60 I think. Each of the children, Christopher, Jacob and Sarah, found the prize egg and would smile. Christopher kept pointing at it, “Matt over here!” Jacob saw it and moved it so the egg could be seen better, “Hey Matt, there might be eggs over here!” Sarah saw it –“Matt, did you search here yet?” Matt made his way toward all the smiling faces. He looked down and around for a bit as each child looked at each other and smiled. Finally Matt saw the egg. He picked it up and held it above his head like a trophy, his smile a mile wide. Matt won the prize bunny.

Matt did get faster year after year and each of the kids found the prize bunny at least once. Our annual egg hunt grew – from 40 eggs to 200 eggs over the years. We had hunts in the rain, watched eggs float by in a flood, hid some so well we didn’t find them for years (eewww!) and as the kids got older the scheduling of a hunt became a nightmare. Eventually the egg hunt faded away. We haven’t had a good hunt in years. As I write this I am making a mental note to put the annual egg hunt back on the schedule. So what if they are all in their 20’s. We have new members of the family that should experience the hunt – a real honest to goodness hunt – for colored eggs and candy. After all, does anyone really outgrow a treasure hunt or the taste of chocolate?

Christ said, “Suffer the little children to come unto me, for theirs is the Kingdom of heaven”. Our little children demonstrated why this is so on that long ago Easter morning in the willing gift of a chocolate bunny.

Going for a walk

“Hey Matt, you want to go for a walk?” A simple question – so simple it seems a very unlikely topic for a story. “Yes. I want to go” a clear, full-sentence response from my son. We grabbed a drink and headed out the door. Matt always walks slightly behind me and sure enough, he strode in next to me, slightly behind, as we walked through the yard. I’m out of shape from a full-blown snowy winter and need the exercise. Matt just likes walking down the road toward the creek. Tom wants to take some spring pictures. The three of us turn the corner and our pace becomes a steady stride. We talk and laugh and walk.

It hasn’t always been that easy to get Matt out of the house. He was afraid of bugs, hated the sounds of traffic and the unknown. Our rural road has no designated path for pedestrians, so we walk in the road. We use to take the whole gang for a walk and we always picked the direction of the creek. Matt liked throwing rocks in the creek and his desire to watch the splash, hear the plunk, and try new trajectories over rode his fear of the outdoors. Instead of asking, “Would you like to go for a walk?” we would ask, “Do you want to go throw rocks in the creek?”

Over the years we took many adventurous hikes to waterfalls and mountain tops, and we dealt with each challenge that came with these excursions. The challenges never prevented us from just doing what we wanted to do as a family. We hiked at Mt. Rogers State Park and walked literally miles of the Appalachian Trail. We hiked old railroad beds and along flowing creeks. We even “hiked” the sandy coast, walking for what felt like miles along the ocean on the hard-packed sand. We have hiked the mall in D.C. and in the woods behind our home. Each of these experiences had something that was feared and something that was desired and Matt had to focus on the desire to withstand the fear.

First, he rode on my shoulders, towering above the itchy grass and the majority of bugs. Then he walked on his own on well made paths, within easy reach of Tom or I for safety. The fear of bugs changed slowly over the years – so much so that if a butterfly landed nearby Matt would extend his hand and coax the insect to sit on him. A bad bug? Well, on occasion a bee would fly by. Fortunately, there was always someone close by that could take his hand or pick him up. Then we had to make sure no one spoke of cougars or bears – which do live in most of the forested areas we visited. Thank goodness we never ran into one. On Mt. Rogers there are wild ponies and we encouraged the kids to feed the ponies Oreo cookies. This made the ponies a bit too friendly sometimes and we had to run away to get them to leave us alone. But we laughed about it, and soon Matt laughed about it too, and eventually Matt even fed the ponies Oreo cookies.

Most areas had some visitor’s center, gift shop or museum and we would venture inside to read about the history of an area. We soon found that Matt liked this part quite a bit. We discovered the more he knew, the less he feared. The more he found out about a place, the more he wanted to explore and this meant he would have to deal with crowds of people. The mall in Washington, D.C. had crowds of people. This particular fear was alleviated by keeping him focused on the history and the architecture in and around the capital and on the many excursions into the Smithsonian.

Even the beach had its down fall – crabs! The crabs come out of their holes at night and run along the ocean shore. Crabs are fast! They run sideways and in unpredictable trajectories. These creatures made Matt extremely apprehensive of night walks. We coaxed him out of the motel using a flashlight. We demonstrated the effect of light on a crab – each would scurry away and our path was clear. Not only did the flashlight empower him against the dark, it was fun to watch the crabs scurry. Flashlights became a required item for any night beach-walking activity. All of these trips were meant for the whole family. To have a real family vacation meant we had to expose Matt to the things he hated.

It’s been years since we completed the adventure hurdle. Now Matt loves going anywhere, anytime. So today we went for a walk. We all looked at different scenery; Tom was looking at the wild flowers, Matt at the ducks at the creek and the cows behind the fence and I at the tops of the trees. Tom pointed to a specific patch of tiny, star-shaped Spraxis and Matt and I both commented. I noticed the squirrel nests and pointed them out. Matt was eager to see them too and was thrilled to finally get a view, happily announcing “Oh, I see it!” If someone drove by or even listened in on our banter they would see only a family going for a walk. How many years have I waited to feel like this?

We’re comfortable. We’re in a good place right now – between hurdles. I enjoyed my walk today. I got some much needed exercise, saw the evidence of spring in the emergence of flowers, and was in the company of 2 good-looking men. Autism never crossed my mind.