We never stop learning – any of us.  After high school there’s college.  After college there’s that on-the-job training we all must endure as we get to know our new place of employment and the specific skills we have learned come into play every day along with even more new skills.  Of course, some of us hit that bump in the road where we feel we are starting all over again as down-sizing of the work place throws many of us back into school and again we learn new skills so that we can once again become employed – with another set of specific skills ready to be put to use in another new environment.  In addition, technology has been changing so quickly it is difficult sometimes to just keep up - from that new DVD player with a thousand buttons to an iPad with a thousand apps, life just keeps us on our toes in the learning arena.  Autism is not any different in that respect. The autistic person is also a life-long learner.  I know this and yet when my autistic son, Matt, continues to learn new things each year – and he’s almost 27 years old now– I am always pleasantly surprised.  So why is it that I continue to be amazed by the new things he learns when I know he is fully capable of learning anything he puts his mind too? Maybe it’s because we started out on such a dismal road.  Matt’s doctors encouraged us to institutionalize him, feeling we could not handle the stresses that come with having a severely handicapped child. You see, Matt is very autistic.  He’s one of those rare individuals that are hovering between moderate and severe. It’s hard to put a degree on it because he has some areas of higher functioning than others, something observed in many autistic individuals. But not many autistic individuals are on the same playing field as Matt.  I never realized this until the Internet came along and I started seeing parent blogs and blogs by adults with autism and it really hit me hard.  Here I had thought for many years that Matt’s autism was getting milder with each new thing he could learn and do.  It seems naive and silly to me now that I could have been so uninformed – but I had never, ever known another living soul with autism – ever. It was rare when Matt was growing up, 1:10,000.  What did I know of autism or the changes that come with age?  What did I know of overall ability?  I soon discovered that someone mildly autistic has only a few common points with my son, and if they can speak, well then …. they have even less in common.  So yes, there’s a huge difference among autistic individuals even if they do have the same diagnosis.  They are different in every major aspect of autism; sensory integration, communication, and socialization.  I am sure we all agree… no two autistic people are alike in their ability in each of these areas, but they all can and do learn.  As parents, don’t we all hope to see the same thing?  Don’t we all look each day hoping to see a new skill or advances in their speech, personal hygiene skills, life skills, reading, writing, an education, the ability to perform household chores, socialize, communicate a little better, maybe drive a car or have a job, and don’t we all want what they want - the ultimate goal of independence? All children can learn – autistic or not. I assure you Matt has learned a great many skills and he can do so much and he can do all of these things without using much speech. Yes, Matt can speak - but there’s a huge difference in being able to speak and wanting to.  Matt simply doesn’t want to.  The English language is very complicated and confusing.  Human emotions are complicated and confusing. Social interactions are complicated and confusing. Now combine them…..you see the problem, right? His desire to not speak is a direct consequence of his autism.  I bring up his speech as I feel that maybe the reason I am always so pleasantly surprised by a new skill is because we don’t talk about it much.  I explain something to him the easiest way I can, we practice together and then he flies solo.  Some things are fun to witness and experience with him – riding a bike or driving the car. Some things that I teach him leave me wondering just how much he understood and I am forced to play the “wait and see” game.   Its skills concerning the later that always seem to catch me off guard when they all of sudden appear as a natural part of his daily living. Recently, I showed Matt how to keep track of his finances.  There is a special book and he must jot down everything he buys and pays for as a part of learning to manage his own money.  When he lives on his own it is something that he must be able to do so that he will always have food, shelter, medical and emergency money from the first of the month to the last of the month.  Matt is on disability and needs to be able to live on a very, very low income (if you are against SSI and disability you should probably stop reading now).  This is his only source of income and it must not only last, but some must be put away for later.  He needs to be able to shop for himself, purchase items by himself and make a note of items he needs – all of which he has done for several years now.  Keeping track of the actual finances is the new skill. He has been writing down his expenses in detail (woohoo!) but the best part is his ability to think quickly on how to solve a financial problem. Matt was shopping with his step-daddy (Tom) on the last week of the month.  Matt had decided he wanted to purchase both a book and a music CD. Tom then explained to him that he didn’t think Matt had enough money in his account to purchase these items in addition to his regular Friday-nightpizza (2 pepperoni pizzas for $11.00). Matt stood still for a few minutes, the expression on his face revealed deep concentration, then all of a sudden he turned and walked off – putting back the CD. Tom noticed he still held on to the book and again explained his concern about how much Matt would need for both pizza and his book.  Matt confidently replied, “On Friday I will get 1 pizza”.  He understood that the book was only $9.81 and if he got 1 pizza instead of 2, he could cover his book financially.  Problem solved, and he conveyed this in very few words. Such a simple exchange between two adults – and yet, it revealed so much.  Matt is on his way toward independence – and I know this. He is a life-long learner and his future can’t be seen with any  certainty – but it sure looks bright from where I sit.  What wonderful experiences will he have?  What will he be able to achieve?  No one can assume anything where autism is concerned.  We are all life-longlearners, all of us.  Yet, I can’t help but be both amazed and pleasantly surprised by each knowledgeable step he takes toward his one and only ultimate goal of independence.  I know it’s probably just a parent thing, but I think this guy is AWESOME!

Learning for an autistic child can take quite a curious route. For my son Matt, the simple process of learning to write is one such example. After learning the alphabet (another curious route) words were the next logical step. We taught him his name, address, and the names of family members, but Matt wanted to know more important words - like “train”. Usually a child begins to learn more words of their daily life, like “dog” and “cat” and “house”.  Not so with Matt. Once he understood that letters formed words his attention went to the listing of his favorite items in a group. Whatever he listed also became new drawings and the progression of his writing became intimately tied to his love of art. His love of trains brought with it the need to list every type of car pulled by the engine and paper after paper was filled with the list – “coal car”, “gondola car”, “box car”, etc. He also found weather to be quite fascinating and started writing long lists of weather related phenomena; “tornado” , “cyclone”, “hurricane” . . . The biggest of storms – hurricanes – have names, and Matt started writing the list of each major hurricane that hit the United States. This led to an interest in all natural disasters and made into a separate, specific list.  The list of natural disasters was followed by a list of all US disasters; “Titanic”, Challenger”, Oklahoma Bombing”, etc. The lists would be simple at first – just the names, but soon I noticed that each list was evolving to include detailed information, such as dates, specific locations and the number of people killed. Lists were a curious behavior he engaged in everyday. New subject lists took time to start, as if he had to know absolutely everything from the previous list before he could venture on to a new one. Drawings of twisters, the titanic, and the space shuttle blowing up filled his art collection – extremely detailed pictures to match extremely detailed lists.  Over the years the intervals between an old list and a new list got shorter and shorter. He went from creating his lists on paper to typing his lists on the computer (saving us reams of paper). I still have the files containing Matt’s lists on my computer, and open them on occasion to just marvel at their thoroughness. Even typing using just a 12 font the list of just one subject can take several pages. His desire to memorize each list brought a wealth of information and Matt could spout off details at will. “How many planets are there, Matt?”  Matt would not only answer with the number but also with the distance of each planet from the sun, the number of moons and rings, and the characteristics of each planet’s specific atmosphere. No wonder Matt did so well in school! After all, most classes ask students to know a list – History, for example, requires a student to know events and their dates, and this was right up Matt’s alley. Matt also wrote lists of his favorite video games and movies. Some of his favorite video games were war games and race-car games. We soon began seeing lists of weapons, armored vehicles, and body gear worn by the soldiers along with new drawings that contained the details of each item. Various types of race cars found their way into his art as well – very detailed race cars. The art and the lists went hand-in-hand. Each list was accompanied by drawing after drawing.  His favorite movies were put on pause and then drawn scene by scene - the important details captured in his art. Of course, there were long lists of his favorite films to go along with them. In the beginning it all seemed a bit curious - that is until I realized that this was how Matt was learning. I soon dawned on me that Matt’s mind was organizing, filing away each bit of information into a specific category and it was tediously hard work.  Many autistic individuals perform similar rituals and most people brush it off as a quirk of behavior, but I would advise them to look deeper, and ask "why?" Everyone has a special method of learning and we intuitively know how to encourage their gifts.  Then we find ourselves raising an autistic child and we forget to be intuitive. Matt’s specific method of learning used lists and drawings. This was his gift – the ability to organize everything to where it could be understood, and retrieved upon demand. He still uses this method for learning new things. His focus is still very intense. He must see the words. He must put them into categorical lists. He must see each item –as detailed as possible. He must train his hands to draw the subject from memory. This is the sequence of his learning strategy. I wish I had een it earlier - I might have advanced his learning sooner. It didn't end there. Words must be put together to make sentences, and this was the most difficult aspects of school. Matt had no desire to add words that could not describe the items of his list and these words were often left completely out when writing a sentence; if, as, it, the, at, or, to. I called them the “useless little words”. Matt had trouble with the insertion of these words into sentences for most of his school years, making English his worst subject. This area of difficulty was finally overcome by Matt’s desire to know more details on a subject and create new story lines for his art. He began reading more. He would copy a story line by line to paper first, then just as he had trained his hands to draw, he trained his mind to write. He copied story after story verbatim, and this meant even the little words had to be written. As his reading progressed from simple stories to novels we saw a dramatic change in his ability to write. I would love to tell you that we had a gifted teacher that taught him these things, or brag on my superb skills of parenting - but let's get real.  In reality, Matt taught himself to write. The teachers helped and I helped – because we supplied him with paper, lots and lots of paper, and we supplied him with reading material – book after book. Most importantly, Matt was allowed to continue his curious behaviors.  The ability to learn came about through repeated practice - on Matt’s own terms - in the making of lists, the drawing of pictures and the writing of stories.  This entire progression encompassed years and required his intense focus - a gift that came from within him.  The curious behavior of list making, a behavior considered quite odd to those unaware, was his way of learning to connect the dots. Matt knew how to train his own brain in a way which was logical to him. Alas, I had only a supporting role in that I supported his curious behaviors (and supplied him with a forest full of paper). To this day I am still in awe of the intensity at which he still drives himself to learn. To the unaware, Matt seems focused on the mundane and his behaviors appear oddly ritualistic.  Looking deeper one can see he  was actually organizing his mind. I admit I never really understood his needs back then, but I am very glad I supported them.  I can see it all so very clearly now . . . . So this story is for those watching the curious behaviors of their autistic child and trying to figure out if these behaviors are acceptable or should be deterred. I understand they appear a bit strange and I am aware that many parents feel these behaviors are unacceptable and want to promote something more “normal”.  I would like to stress the exact opposite.  I challenge you to look a bit deeper.  There’s a good possibility that your autistic child has found their very own unique way to learn. I don't see the behaviors as odd - not anymore. I highly recommend you support the curious.

We all know that parents don’t get an instruction manual on how to be parents.  We all want to know the secrets on how to raise a child so they can achieve their potential and how to interact with our child that builds confidence and character.  All of us also know that no one goes into parenthood with all the answers - we learn slowly, year by year.  From the pregnancy stage to interacting with the adult child, we all travel a road that leads to the future – to the next generation.  The knowledge we attain is so vast that no book could possibly cover it all.  Yet, when we need help we can search the Internet, pick up a book that specifically covers the topic or ask other parents questions on how they dealt with this or that. We make progress ever forward. It’s never a smooth, uneventful road, but it shouldn’t be a chore - like a dreaded homework assignment.  It should be more like a rocky adventure. It is true what they say, that parenting is the hardest job one will ever have, but also the most rewarding. So why should having a child on the spectrum be any different? As complex and challenging as it is (just ask any parent of a child with autism) it is still the most rewarding experience of our lives.  The difference is that parents of autistic children learn skills that parents of neurotypical children never develop.  That’s not an insult – just a fact of life. The communication deficits alone challenge us to look deeper to decipher the facial clues and body gestures early on as it may be the only form of communication we have with our child for years.  Looking deeper requires constant vigil and constant learning.  For parents of adult children on the spectrum the road to understanding autism wasn’t even a walking path yet, let alone an actual road. When my son was diagnosed the prevalence of autism was rare - only 1:10,000.  Knowing another parent with an autistic child just wasn’t possible. Almost all of us from that generation were given a bleak diagnosis of autism with a recommendation for institutionalizing our child. Some did, many of us did not.  Regardless of the route we took long ago, each of us did what we thought was best at the time.  Many of us went against the dogma of institutionalization and in doing so were able to envision a different landscape for our child’s future.  This different perspective was better and slowly - a new path to a new destination began to emerge. For those of us who decided to take upon ourselves the “burden” of our handicapped child, life was surely different than we expected, but never, ever, a “burden”.  Without the books and without the resources of the Internet, we gained insights into autism that few professionals were even interested in. Things like empathy, flapping hands, lack of eye contact, the need for routines, echolalia, limited food choices, covering ears to block loud sounds, not responding to pain for either sickness or injury, were all dealt with intuitively as parents.  To professionals these were symptoms.  To us, these were everyday issues that led to greater discovery. Curiosity and love helped us to look beneath the symptoms in order to understand what our child was really dealing with.  One by one we found the assumptions of what the professionals thought they meant were false.  We found empathy had been there all along. The flapping of hands was actually an expression of emotion – not self stimulation. The difficulty with eye contact and the covering of ears around loud noises were due to sensory issues – not self absorption. Routines were not strange behaviors, but instead a way to diminish the chaos of the environment.  Echolalia was just speech practice and limited food choices were not due to a picky-eater but a combination of taste, texture and color. It was not that a child could not feel pain – they couldn’t express pain. We, the parents of autistic children, found sensory issues and fear to be the basis of every behavior in autism long before professionals even decided it was worth looking into.  Each of us became the autism expert for our own, uniquely different, child. Sometimes we were successful and sometimes we were not, but we kept forging the way – without any awareness that we were doing so.  None of us ever imagined a growing prevalence of autism, now somewhere thought to be1:99 to even as high as 1:65. As our children grew older the world moved on. The Internet eventually linked us all together.  We found we were not alone anymore and we had plenty to share with the parents of newly diagnosed autistic children.  Blogs and websites now provide help for others walking the same path. So many parents are now on the path that an actual road has begun to emerge. Where does this road go?  The road goes to a future with better awareness, better treatments, and greater possibilities for our children to succeed in this world.  Someday the road will be paved and easier to travel and it will be because the parents of each generation made it so.  Each new generation will have a better map and will lay a stronger foundation. As a parent who has been where many of you are now I feel I have much to share.  Maybe some of it will help you, maybe it won’t, but here is my basic short-list to get you a little further down the road: 1. Read as much as you can from other parents.  Some of what they experienced will be relevant and helpful. Some will be inspiring. All will confirm that you are not alone. 2. Read articles and stories written by adults on the spectrum.  They are varied and enlightening.  Each has a story to tell and no two will be exactly the same. 3. Know your own child’s behaviors and look deeper to find their meaning.  Be the expert for your child. Discover the wonderful. 4. Share your insights with other parents.  You can do this by writing your own blog, getting together with other parents whose child is in the same school, or possibly sharing with other parents at a support group.  Parents new to the diagnosis especially need you. Reach out and support the next generation. Help them to get on the road. 5. Learn about the various medications, treatments and diets but use your own instincts and judgment about what is right for your child.  Each child is different.  These types of things only work for some – not all.  Realize that you may find a better way that doesn’t require all of these.  Be open to explore your own insights as a parent. 6. Be very active in the education of your child.  Go to every IEP with a plan of your own.  Be the expert.  Teachers and therapists know general information only. You, on the other-hand, know the specifics about your child – you are your child’s only real expert.  Pop in un-expectantly to observe.  Keep educators on their toes. Be kind and push gently.  If needed, push hard. 7. Share your awareness with those who do not have an autistic child.  They need to learn about it from someone who knows – not from just the media. 8. Be a myth-buster.  There are many myths out there about autism.  The one that really irks me is the “world of their own” myth.  My son is in my world and I am in his.  He is not alone.  He is not an alien.  He is just different, not less. Parents who have a child on the spectrum pushed for the research, the treatments, the educational rights and the awareness of autism that are out there now.  Just as the parents of older adults helped to dispel the refrigerator-mother, I have taken up the calling to share my experiences and my insights as well. Each of us can extend hope to the next generation.  We are the builders of a new road, toward a better future for our children. I found this quote the other day that sums it up quite nicely; "Hope is like a road in the country. There never was a road; but, when many people walk together, the road comes into existence." (NationalOrganization for Rare Disorders, Inc.) Come. Take a walk with me. Try to envision a better future.  Let’s continue to build this road together.

As I sit at my computer I can tell a beautiful fall is just around the corner.  The leaves are just waiting turn bright shades of yellow and orange, and the nights are about to get cooler – I can smell it.  I look forward to the fall – mostly. This fall there are added events. It just happens that this year we will once again go to the polls to vote for the candidate that best reflects our hopes for the future.   Matt loves politics and will eagerly go with me to the polls to vote, but Matt’s vote doesn’t count.  I have yet to tell him because it breaks my heart.  Matt, my wonderful 26 year old son, was deemed legally incompetent at the age of eighteen and that means he is not eligible to cast his own ballot.  How do I tell him that in this land of freedom, equality and diversity, that he loves so much, that his voice will not be heard?  It hits me twice as hard this year because it is also time again for me to complete the Guardian’s Annual Report.  Filling out the report is not difficult, but the weight of it on my soul can be very difficult indeed. In order to become the legal guardian and conservator for my autistic son the court had to first find him incompetent to manage his own affairs.  It was (and still is) a very emotional process.  It is something that I had to choose to initiate because I knew Matt needed me to do it - but that doesn’t mean I took it in stride.  It literally took years of thoughtful contemplation to even begin the legal process.  I tried my best to weigh the consequences for both obtaining guardianship and for not pursuing it all. Unfortunately, each comparison always pointed toward the “must get it done” side of the argument.  No matter what people might tell you, having your child deemed legally incompetent is neither an easy route nor a desired one.  I felt all those hopes and dreams in the back of my mind – the ones where I pictured my son being able to make it on his own one day – begin to disappear as I put pen to paper and signed that one official document. I realized in an instant, before the ink even had a chance to dry, that this beautiful mind, this wonderful young man that is my son, would never be like so many other autistic people – people like Temple Grandin who have made it on their own.  He would never be completely free to make his own decisions every day, or have full independence to live the life he chose to have. It is not something to be taken lightly, the role of Guardian, and yet I can see very clearly that it could be easily abused.  Guardianship does not mean dictator – it means protector. My son needs me for some things -I accept that and Matt accepts that - but I also need to allow him as much independence as possible.  The hard part is figuring out where my role as his guardian begins and ends.  To me, it’s like chasing shadows across the lawn as the sun moves across the sky. Just when you think you have it all figured out the light shifts.   The shadows can either become a deeper shade or become so thin as to let small beams of light poke through.  And it never ends, this shifting of responsibility.  Even as an adult, Matt’s autism is in flux.  I have to remind myself that just because there are some things he can’t do now that doesn’t mean he may not be able to do them next year, or the year after, or even 10 years from now. I knew Matt needed me to help him after the age of eighteen, as he was still in high school with graduation coming up quickly.  Without guardianship, Matt would’ve refused to be given speech therapy, would have thrown away his IEP and never would have fought the school system over the end of course exam in English.  He needed that extra writing time and to have his exam read to him.  Without guardianship, Matt would not have graduated number 4 in his class that year – and probably would not have graduated at all. Not because he didn’t want those things, but because he would not have understood the implications for not having an IEP.  Matt can’t communicate like you or I, he can’t tell you his problems, his fears, his confusion, can’t foresee the consequences of his actions, and he can’t do finances.  The worst part for him of course is the difficulty talking to people. Please understand, Matt can’t– not won’t.  He is learning every day, and because we have a special type of communication between us I can help him.  Communication is at the heart of his “can’t”.  As we work on communication and as his ability to speak to other people improves I know some of those “can’t” items will change to “can”.  I know this.  I have watched it happen many, many times before.  It takes time and teaching and love. My role as Matt’s guardian is one I take very seriously.  I am his mother and as his mother I shower him with love, acceptance and opportunity to be all he can. I am his best friend and his shoulder to cry on.  As his guardian I am his teacher, his mentor, his financial officer, his personal healthcare professional, his cruise ship director and his drill sergeant. The roles overlap quite often I assure you.  So, as another fall arrives and I fill out another Guardian’s Annual Report I think of my son’s future.  I still have dreams of independence, but they are not as pristine as they once were.  Matt’s independence will be on a sliding scale between what he can really achieve and what he can not YET achieve.  I know I will continue to teach him every little thing I can think of, and we will tackle another year one day at a time. He will again go with me to the polls on voting day as he has always done and again he will walk beside me as we go behind the curtain to vote.  I know Matt is not incompetent on politics and is actually very aware of which candidate has his best interests at heart. And again, I know I will not tell him that his freedom to vote as a US citizen has been stripped from him. Instead, like on every Election Day within the past decade and a half, I will give my son the voting pen and he will mark the ballot. As his guardian I am his voice and through me his voice will be heard because on voting day Matt is my right hand – the one that holds the pen.  As his guardian, I will continue to protect him and will share my freedoms with him always, until that day – soon, I hope -when he can have his own freedoms returned.

Navigating autism takes time – lots and lots of time.  It took until Matt was almost 5 years old for speech to come, and then it was very few words for years after.  It took almost 7 years to get out of diapers and almost 9 to completely be potty trained without the occasional accident.  It took until he was almost 7 years old to get use to a change in routine, to age 12 to agree to try a new food item, and he was somewhere in his early teens when he started to pick out his own clothes.  Autism slows down progress, but the good news is that it doesn’t stop progress. Doing something new just takes more time to learn. I was never in a hurry – except for speech.  Speech has a window of opportunity, so we pushed him to speak.  Matt saw a speech therapist from his diagnosis at two and a half years old to his day of graduation from high school at 19 years old. Everything else was mostly accomplished with a bit of steady pressure and a great deal of time.  Matt was given equal time to flap his hands and spin his toys and time to focus on learning something new. Now that “something new” is the move to a place of his very own and a chance at independence.  This has also been a long time in achieving.  My oldest son, Christopher, bought a house before he moved away.  My step-children, Jacob and Sarah, both got married before they moved to their own homes. Matt has been a witness to these changes in our family dynamics.  He wants his own place too.  I call this Matt’s “ultimate goal”. He has talked about it out loud to himself over the years and each time he does his voice is excited and full of energy.  He craves it.  Living on his own will mean he is in charge – something he needs to make himself feel “normal”.  Matt has never liked being autistic.  To put it bluntly, he hates it.  He hates that he is different, that people view him differently, he hates that his speech is not … normal.  He hates that he has difficulty understanding communication nuances.  He doesn’t want people to know.  Finding a way for him to accept it as a part of him has been a very difficult task.  We are still working on it. “Autism does not define my son” – a nice little phrase I have read a thousand times on blogs and social media pages.  Unfortunately, yes it does.  His autism characterizes his speech, his habits, his way of thinking, and yes, it characterizes his daily life.  Matt is “more than his autism” – also a nice popular phrase – and this one is a bit more accurate.  Matt is talented (his artwork is astounding), compassionate, friendly, intelligent, and easy to be around.  He has a laid-back style that invites interaction.  Then his autism makes those interactions difficult and sometimes scary.  Social interactions and communication difficulties identify Matt as “different” and Matt hates being different.  He wants to blend in – but can’t.  He wants to hang-out, go places, do the things that other people do, and he tries his best to be just another guy, he really does, but he is aware that he is different.  Social interactions are very hard. He knows he is different and it hurts him.  If it hurts Matt, it hurts me.  Autism is apart of him – the only part of him he dislikes. Moving to an apartment is a wonderful goal but for Matt it’s so much more than just gaining some freedom – it’s also a way of trying to shed some of his autism. Moving out is a complex task for the autistic individual.  It’s not as simple as packing your bags and going out the door. Moving out is another step toward independence, and because of his autism it takes time – lots and lots of time. Preparing for independence requires Matt to be able to care for himself.  Over the years he has learned to do his own laundry, make his own meals, shop for himself, dress himself, take care of his personal hygiene, feel at ease at the dentist office, keep track of his finances, use a cell phone, and not freak–out when problems arise unexpectedly.  He still needs to be able to talk to his doctor, tell someone when he is ill, seek help when needed, dress appropriately for the weather, be aware of his environment and foresee consequences of his actions and various situations.  We all learn from our mistakes as we navigate our independence.  These past several years Matt has had practice with each of these while in the safety of our home.  He has learned much, and continues to do so.  Yet, I know that most of what he will face alone can only be practiced after the move. It’s scary for me… but not for Matt. Matt is ready to take the plunge and believe it or not, I am ready to let him – scared, but ready.  The years have flown by – where did the time go? To prepare for this I had made myself a goal.  I set this goal when Matt was between 10-12 years old.  I saw that his autism was dynamic and changing, he was not stuck flapping and spinning, he was not forever echolalic or stuck in a specific routine.  Matt was talented, able to learn (graduating number 4 in his class), he was brave and determined and he was compassionate.  Maybe that doesn’t surprise you, but it did me.  I was advised to institutionalize my son at age two. I was told he would never be able to do the things he does now.  That was in 1988.  Parents today know better, but back then we were fighting against all the odds at a time when autism was only 1:10,000.  We were going it alone – there were no other parents to talk to, no specialists to see, no new ideas to research on how to  teach, raise a child or cope with the stresses that came with the diagnosis. When I realized Matt could do so much more than anyone predicted I began thinking about the possibility of independence.  It took several more years to convince myself that yes, he really could do it.  I then set a deadline – something to keep me focused on his progress, nothing more –and that deadline was before Matt turned 30 years old.  This was a huge step, just to consider the possibility.  It also seemed far enough away to prepare him for the challenge and long enough for me to get use to the idea.  Matt will soon be 27 years old, and the “ultimate goal” deadline is looming closer.  For the first time since his diagnosis I actually believe all the way to my soul that he can do this.  Matt made me believe. Next summer I will be looking at apartments, researching adult disability services and transportation options.  No group homes are on the table.  First – the closest adult autism services are several hundred miles from here – not an option.  Second – Matt does not want to be with other disabled adults because he is trying to get as far away as possible from any reminder of his own disability.  He would never allow it.  Matt needs an apartment, close to shopping and he needs transportation. He may need a social worker to oversee his healthcare and living arrangements, but most importantly, he needs me to understand his need to be as independent as possible.  It will be a slow transition.  He will have either my husband or me staying with him 4-5 nights a week at first.  Then we will cut down on the number of overnight visits to 3, then 2, then 1. It will take time…lots and lots of time. Taking our time to work on each aspect of his autism has worked pretty well thus far.  We are in no hurry.  We want him to be as comfortable as possible and transition into the realm of independence slowly, flattening out those bumps in the road as we find them.  I am very proud of my son for the determination and courage he displays as we move toward the “ultimate goal”. Recently, Matt said to me in a very serious and determined voice, “I will have my own place.  I can do this!”  He wasn’t just affirming to himself that it was possible.  He had directed the comment at me.  Matt was assuring me it was possible.  I believe him.  Only time will tell if Matt can really handle independence, but I know that if we take it slow and easy the chance of success is pretty darn good.  It’s time for me to start letting go.  It’s amazing to just pciture Matt in his own place, knowing what he had to overcome to get to this point. It's true - nothing is impossible.  Navigating autism just takes time.

How do you deal with defiance?  It’s hard enough for a parent to deal with defiance from any child but what about from an autistic child?  I can look back and see that it all could have been handled much better if I had understood the triggers that initiated the “meltdowns”. One specific trigger always resulted in a battle of wills and physical strength. If I had only known then what I know now those battles would have fallen away at a much earlier age. Although I learned early that Matt had a prescribed formula in the progression toward a meltdown, it took me years to discover their root cause.  For those of you who don’t know what a meltdown is I would describe it as an escalation of defiance to the degree of def-con 4 (possibly 5) as compared to a typical temper tantrum – which I would rate as only capable of reaching def-con 2.  Regrettably, the cause was not discovered until years later, after Matt had already been through numerous high-level meltdowns.  Imagine my shame when I discovered that I had unknowingly triggered the worst of them.  “How?” you ask. I told Matt “No!”  The trigger to a meltdown turned out to be one simple, and completely avoidable, word. When he was still non-verbal (prior to the age of 5) defiance was expressed in various behaviors – crying, screaming, hitting, biting, or my all time favorite - the full-body lock down. Child proof locks on cabinets didn’t prevent him from opening the cabinet door under the kitchen sink and the latch on the back door didn’t prevent him from escaping to the yard, then to the road and down to the creek.  Considering the dangers a child is surrounded by on a daily basis, you can understand why I used the word “no” a lot. I didn’t realize back then that Matt’s comprehension of the word “no” meant something more painful than a simple veto.  The word “no” meant “rejection” and suggested disapproval of him to his very core.  I now realize Matt has hated this word since even before he could actually say it.  When he was young I attributed his emotional reaction as pretty typical for a pre-school age child – maybe a bit on the exaggerated side, but I was a fairly new mom – what did I know?  I didn’t see the pain - not really see it -until he was between 8 -10 years old.  Prior to understanding the cause of his meltdowns I had unlocked the pattern of behaviors indicating one was imminent and could at least prepare myself in advance for the ensuing battle. The sequence began with a very stern “No!” from me.  This was met with a show of defiance from Matt. Upset, crying and angry he would make it clear he did not approve of my rebuff and was determined to continue whatever it was he was doing.  Pushing limits, that’s what I thought he was doing.  So, of course, I said “no” again, even more forcefully than the first.  My second use of the word only made matters worse - it lit the fuse for a meltdown. A full-body lock down was his preferred method of defiance in public, whereas swinging fists and kicking legs was usually his choice in our home.  In a full-body lockdown Matt would drop to the floor and stiffen all his limbs.  It was his way of saying, “I’m not leaving”. Picking him up was difficult, but not impossible.  After standing him part-way up Matt then had to be swung over a shoulder and carried out as if being rescued from a fire. You can bet there were plenty of stares from passersby – and they were not kind stares, if you get my drift. If we were home Matt preferred to fight. To prevent him from injuring himself or others I would have to physically contain his movements.  First, I would pull Matt to the floor with me from behind so that he sat in my lap.  Then I hugged him - tight.  My arms wrapped his arms, my legs wrapped his legs, and still he was able to head-butt me a few times.  Once in my arms Matt would struggle mightily to free himself until finally he just broke down. Exhausted physically, Matt would suddenly go limp.  Then the angry cries which had been filling the air from the onset changed to gut wrenching sobs.  As I sat on the floor holding him I would rock us back and forth and speak softly in his ear.  I knew by the anguished cries and the limpness of his body that the battle was over. Nothing in this world has the power to rip my soul to shreds like Matt crying.  His cries are no ordinary cries.  They come from somewhere deep inside him and when they surface they release all the anguish of his frustration and despair.  They are so sorrowful that if I hear his cries for longer than a few minutes, I will cry as well. Before I let him go Matt would always shift his body so he could look at my face to make sure that I was again smiling.  Smiles meant everything was going to be O.K.  It took hours sometimes to calm him down to the point that he could go on to play again. A meltdown left us both physically and emotionally spent.  The worst part was thinking we would have to go through it again someday – as there always seemed to be a next time. Although I knew the routine and what to expect I couldn’t connect the dots between his extreme reactions and a simple reprimand.  I often wondered about how it would be in the future.  Would I have to physically contain him as a grown man?  Was that even possible?  I knew the day would soon arrive when Matt would get the best of me and knowing Matt, he would not be able to handle the guilt of hurting me or anyone else if something happened.  Still, I couldn’t figure it out. I wish I could say that my super-human powers of deduction found the trigger, but that would be a fallacy. Matt actually told me, “no more ‘No!’ no more ‘No!’, please!” in a voice racked with both pain and sorrow.  How would you interpret that?  He could mean he doesn’t want me to say he can’t do something, or he could mean, quite literally, he doesn’t want me to say the word “no”.  In autism, most things are meant literally.  The next time he was reprimanded for something I avoided the “no” word and although Matt showed disappointment, and some confusion, there was no meltdown.  I was in shock. Could it really be that simple? For all those years I had not taken him literally.  All those forcefully stated “No!”s, all those battles that didn’t need to occur.  How many times did Matt fight to preserve himself and force the “anger” in my voice to go away?  I had raised him on smiles and laughter. I had coaxed him to interact by showing him smiles and lessening fear.  When he saw my face and heard my voice as I reprimanded him, it was as if his safety net had vanished and he was falling.  Meltdowns released frustration and anger but also were an indicator of fear. Meltdowns were the only way he knew to fight back. Thankfully, I eventually became aware of the power of the word “no”.  Things didn’t escalate if I used another word or phrase.  Saying “Not now, Matt” or “We can’t right now” was handled much more smoothly.  Although I kept expecting the situation to rise to def-con 4, it rarely rose above def-con 3.  When it did escalate, his screams would intensify and I would instantly become aware that I had said the word “no” again. I stopped using the forceful “No” years and years ago.  There have been no meltdowns. I have said “no” in fun and in phrases like “no-way!” to help desensitize him to the word and he now handles hearing it quite well. That’s probably because he always examines my face to see if I am smiling. Knowing this, I have reserved any stern looks to times when I absolutely have to use them. Autistic children live with fear – lots and lots of fear.  We work everyday to make the world feel a bit safer for them, but still fear lurks just beneath the surface.  Fear accounts for many autistic behaviors.  Is it such a leap to think that fear also underlies the meltdown?  I realized that Matt, for all his accomplishments and progress, still struggles beneath the surface to cope.  He handles all the ups and downs so well that I forget sometimes that fear is hiding just beneath the surface.  An angry face or a sternly uttered word from another person and Matt could be pushed toward a possible meltdown.  Even now at 25 years old it is still possible – though I hope the likelihood has diminished. If it did happen again I am confident I could intervene and stop it before it escalates, but what happens when I am not there anymore? This is why I write – to let others know what autism is and to encourage other parents to look for deeper meaning behind each behavior –even meltdowns. If you are struggling with meltdowns from your own child I highly recommend hunting for the trigger. All children with autism are different, but they do have a common thread. . . an underlying fear. Remember that for every action (trigger) there is an equal and opposite reaction (meltdown). I am convinced that for autism this is true.  Every outward behavior has an underlying and purely logical reason. As parents and caregivers, isn’t it up to us to try to understand them just as much as they are trying to understand us? If I only knew two decades ago what I know now . . .

Take a look at that drawing above . . . Matt drew this to express his hurt and frustration at the disappearance of his memories..... he was 16 years old and could no longer remember his childhood.... only 16. There’s so much variance in autism that sometimes it’s difficult to connect with others having similar problems.  Some autistic individuals have food allergies and gut problems, some have seizures, and some autistic people have more than one disorder piled onto their autism. The possible problems that can accompany autism seem infinite, and yet with all the variances on the spectrum I have not come across any mention of memory loss. I have been searching for information on memory loss in autism for quite some time, but alas, I have been unsuccessful in my quest.   It occured to me that Matt may be alone in this aspect of his autism.  Is he? Many autistics have a great memory.  Matt has always had a wonderful ability to retain scientific facts and thousands of snippets from history.  He can learn how to do something very quickly by recalling directions almost word for word. He has had this gift as long as I can remember.  Unfortunately, his memory for people, places and events of his childhood are gone – completely gone.  He has no memory of being a young child and cannot recall an instance of his life prior to the age of 10.  Is this because Matt, my son, is moderate / severe on the autism spectrum?  It’s not easy finding others with the same degree of autism to ask.  Most autistic people I come across on my search are those on the milder side. They are articulate, in both speech and in their writing. None have ever mentioned memory loss – not one.  I assume that if I actually met someone more like Matt, someone very autistic, that they would have greater difficulty in their ability to converse or write or possibly even understand my question, but I would at least attempt to ask it.  I know I could be wrong, but I may never get the chance as the more severe cases are still quite rare.  If this is the case, that moderate to severe autistic individuals can suffer memory loss of their childhood, then I feel it’s something I need to put out there if only to make more people aware that there is even a problem in this area. It began when Matt was on the cusp of puberty.  Many of his autistic behaviors had disappeared by then; hand-flapping, spinning, echolalia, avoidance of eye-contact, need for routines, and so on, had slipped away one by one.  He still loved repetition in both drawing animated characters and in watching his favorite movies and cartoons, but I understood that this was his way of teaching himself conversational speech and social interaction. I never thought of it as detrimental (and I still don’t).  He was doing well in school and was on the Honor Roll every time.  He needed time to himself each day and I gave it to him. He seemed so happy and content. He was more aware of his peers and wanted to dress like them, walk like them and was attempting more complex interactions with long-time friends.  He even had a few sleep-overs during that time with a friend coming to our house one night and then Matt spending the night over at his friend’s house.  Life was not perfect, but hope did shine brightly. Then one day I heard sobs coming from his room and went to investigate.  Matt was sitting on his bed crying.  I sat next to him and put my arms around him and hugged him tight.  “What’s wrong, Matt?”  I asked as I rocked him slowly side to side.  “I can’t remember,” he replied.  I assumed he felt sad but didn’t know why.  Sometimes hormones do that at puberty and in my quick assumption that he was experiencing a prepubescent hormone surge I didn’t prod him for a deeper explanation.  He continued to cry, the anguish surfacing in giant waves of despair were tearing at my soul. “I don’t remember ANYTHING!” he screamed.  It took me by surprise.  Not anything?  What does that mean?  “What do you mean Matt, that you can’t remember anything?”  And so the conversation began in which my son explained to me that he really could not remember being a child.  He could remember last week, last month, and some of last year, but the further back we went the more obvious it was that most of his childhood memories were gone - all gone. This was not a one-time instance.  Over the next few years Matt had more days of shear panic where he couldn’t pull up in his memory even important events he wanted desperately to hold onto. When the all was said and done Matt had lost everything before the age of 10 and 70- 80% of everything from age 10 to graduation at age19.  We’re talking years of memories slipping away and although new memories were being formed everyday, only a few were actually staying in his mind for recall. Calming him, comforting him during this time was heart breaking for me too.  I couldn’t imagine how awful it must feel to not know something about your past.  I would bring up certain instances from his past, trying to jog his memory, but although my intentions were good, it only made him feel worse.  Amazingly, Matt stayed on the Honor Roll the entire time he endured the destruction of his own personal life history.  It seems his short-term memory was still intact and as a result, grades remained stable. The turmoil ended as adulthood set in and he again has memories of people, places and events – but only of the last 8-10 years. I think about it – almost obsessively. There are a few possible culprits that could have caused this dramatic change in his memory.  During that particular time Matt had concurrently gone through puberty, had pneumonia (and had to be hospitalized for almost a week on IVs and antibiotics), and had a pneumovax shot shortly after his recovery.  Since Matt is the only one who knows when it all began and he can’t tell me I am left to wonder.  Was it one of those?  Was it the combination of all three? So I research the blogs and the autism sites trying to find a hint that other autistic children have experienced something similar only to find silence in this area.  There’s no mention of this terrible aspect of his autism in others that I am aware of and yet, I can’t help but feel someone else had watched this heart-wrenching scenario playout in their own child.  In my soul I feel there are others.  Are there? I have come to the conclusion that what I must do is just ask straight out – have you ever known anyone with autism to suffer childhood memory loss?  As a parent or a grandparent of an autistic child, I know you understand why I need to know, why I have to ask.  So I am asking you, from one parent to another, are we alone?

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! To this day whenever I hear a cartoon on I know thw laughs are not far behind - it remains music to my ears.

I have insomnia on occasion and after tossing and turning for hours I will finally give up and just get out of bed.  I usually get up at 4:30 am, but on nights when I can’t sleep my resignation usually sets in around 2-3am.  Regardless of the day of the week, whenever I have insomnia I can walk out of my room and give my son Matt a hug - he's still up and he’s always happy to see me. For Matt, being up all night is part of who he is.  Matt is a true night owl. Most parents get up in the morning, wake the kids for school and everyone starts their day together. For the entire duration of Matt’s school years getting him up and going was a real chore.  Tears and anger greeted me each morning and again most nights when I put him to bed.  Most of this was due to Matt’s fear of the dark.  He has required a light on in order to sleep since autism set in at age 2. When Matt graduated from high school I allowed him to choose his own schedule.  It really came as no surprise that he chose to be up all night and only head to bed as the first rays of sunlight began to appear each morning. His new schedule was not a problem for us as my husband and I have worked opposite shifts for most of our marriage.  My husband worked nights and I worked days.  Someone was always home with Matt.  Matt’s night-owl schedule didn’t even faze us as Matt slept when Tom slept and got up when Tom got up.  When he awoke he spent the afternoon and evenings alternating between interacting with us and doing things on his own.  When late evening came I would go to bed, my husband to work and Matt would revel in his time alone in a quiet house.  This wasn’t surprising either because I knew how much constant sounds and commotion annoyed him. When he was still in school it was difficult for him to be subjected to noise and constant activity all day. Is it any wonder then that his first decision as a new graduate was to choose a schedule that would lessen the assault of noise on his senses? I thought his new schedule would last a month and he would finally get into a more “normal” schedule – but it became clear after that first month that Matt was enjoying his freedom, and his night time “king of the house” status too much to ever willingly give it up.  I tried bribing him, cajoling him, and even forced the issue a few times before I realized that it was I who was wrong in trying to change him. Over time I began to see that his new schedule brought with it some very cool perks – like happiness and mental focus.  Matt is always in a good mood now.  It is obvious that his stress level is very low which allows him to focus on learning and creativity.  He watches science DVDs, and various ones on history.  He draws, listens to his music, reads, and can think freely without interruption.  His level of communication has been enhanced and he’s more willing to interact during his afternoons and evenings with us. His fears are abating.  He is always willing to go somewhere, do something, even if he has never done that particular activity before.  Matt is obviously loving life. Everyone has a biological rhythm set just for them, but unfortunately most people must adhere to the cultural norms in order to work to pay the bills and put food on the table. But....... if you could pick your schedule, wouldn't it be different from what you do now?  Matt is 26 years old and has been my night owl now for 7 years.  I asked him to give me a few reasons as to why he liked his schedule so much.  He listed them for me. As I listened I understood completely.  Basically, it boils down to 3 simple reasons - 1. The house is quiet.  The dogs are sleeping, the phone doesn’t ring, there’s no traffic zooming past the house, no airplanes skimming the tree tops, and no one comes to the door.  The only noises in the house are noises of his own making; his music, his TV, his video games. 2. He is in charge.  No one is telling him what to do.  He feels more like an adult, more “normal” as everything he does is his choice.  He can read books on his Kindle or one of his many paperbacks without interruption, and Matt reads a lot. 3. The lights are on.  Darkness is terribly frightening and the lights keep the darkness at bay while his activities allow him to not think about the darkness outside.  He sleeps only after the sunrise – when the darkness has again been beaten back to simple shadows and the light of dawn signals the safety of a new day. My husband and I and Matt each have our own schedule to this day and amazingly, they don't conflict. Each of us has our quiet time, our busy time and our family time.  I use the mornings when I am off work to clean house, do finances, grade papers or even write.  I am now as spoiled in my routine as Matt is in his.  As you are probably aware, time to one’s self while your kids are young is almost impossible.  What I have now is a very different life, and I will admit it – I like it. I am happier too. I can’t even come up with a good reason anymore as to why Matt should be forced to abide by my schedule. It's not like he's in need of supervision. He's 26 years old and can handle responsibility pretty well. If he needs me, he knows where I am and can come get me - but he rarely needs me. We still eat meals together and have time to share stories or watch TV, or go somewhere together everyday, so it's not like he doesn't interact. On days when I have to take him to the dentist in the morning (or to some other appointment), I warn him in advance that he will need to get up early and he does so without argument or complaint.  Of course, he doesn’t go to bed much earlier the night before (it's a darkness thing) so he just survives on less sleep for a day. Normally, Matt gets up every afternoon and immediately does his chores (without me asking).  He fixes his own meals as I fix ours. He takes great pride in his independence and his schedule reinforces that pride each and every day.  Most importantly, he has learned to accept who he is.  All children eventually grow up and find their niche in life and I am confident that Matt will be successful in his own quest. I know he doesn't fret about the fact that he is different anymore. He likes himself. He is confident. His choice to be a night-owl was the right one for him.  It was me who had to learn to bend and be more flexible. As parents, we feel great pride when our children come to the point where they are happy in their own skin. I am very proud of my son. It is apparent to me now that over the last 7 years he has learned much about himself through introspection during those quiet, wee hours of the morning. Matt is fully aware that his autism makes him different and yet he is happy with who he is and doesn't think about it much. I am reminded of an interview with Temple Grandin when she was asked if she wanted to be cured. Her reply was no, she was happy with whom she was and didn't see the need to have to be like everyone else.  Matt is on that road of self acceptance and independence. He knows he has several goals to reach - and each of those goals require him to find a way to lessen the effect his autism has on his ability to communicate effectively with others.  Yet, even his awareness of his communication deficits does not change the fact that he is not interested in being anyone but who he is. Out of curiosity I asked him, “Matt, if there were a cure for autism, would you want to be cured?”  He scrunched his face as if I had just insulted him and replied with a resounding, “NO!” My heart leapt unexpectantly.  I am not only thrilled Matt has found self-acceptance, I am also convinced it was a direct result of his decision to be a night owl - a decision which led directly to lower stress and a clearer mind and introspection.  What is really mind blowing is that none of it could've happened if I had not been willing to bend.  If I had pushed him to conform to a "normal" early to bed, early to rise type of schedule, would he be so confident and happy now?  I never would have guessed that "late to bed, late to rise" would prove to be such a cornerstone of personal development.

This is one of my very first stories written in the winter of 2010. Oh, the joys of potty training . . . I didn’t think we would ever get out of the diaper stage. How do you potty train an autistic child? First, they have to learn control and second, they have to learn to clean themselves. It’s nasty business for adults, think of how nasty it must be for someone with an acute sense of smell and touch. Matt was in diapers for years. We tried everything to get him to control his bladder. Nothing seemed to work. He was 5 years old and diapers didn’t fit well anymore. Training pants were always wet. Even the pre-school was tired of changing him. Our nerves were shot. We just didn’t know how to proceed. One summer afternoon I was out on the deck watching Matt in the kiddy pool. He even had to wear protection in the pool because of lack of control. His disposable training pants were saturated from pool water and it was time for him to get out. It practically fell off as he stood up. I grabbed the dissolving clump before it could hit the deck. Nude and loving it, Matt ran around the deck in the hot sun. Tom had just come out the door and we were laughing at Matt’s obvious joy of being naked. Christopher came out to see what all the laughter was about. I’m not sure who had the idea first - was it Christopher or Tom? Anyway, the next thing I know both were standing off the edge of the deck and peeing into the yard. Matt was fascinated. Remember that love of lines and arcs made by water? Well, he was hooked almost immediately. He ran to the edge and stuck his belly out as far as it could go, pushing his back with his hands, and began to pee. Here I was, in awe of their glee and a bit taken back. I would have been mad if it weren’t for the fact that it worked – and they seemed to be having so much fun! Everyday after, Matt would stop what he was doing and run outside to pee. Clothes were easy to remove, and the training pants were finally becoming useful. Matt loved the pool and spent most days naked as J-bird, splashing around and jumping out to pee off the deck. We lived in the country, no one around to see, and I couldn’t see any harm in it. When we had Jacob and Sarah for the weekends, Jacob would join in and Sarah and I would retreat to the house. Sarah was very jealous, and to tell the truth, so was I. It was this particular summer that our cat had kittens. They had a nice little shed just off the deck where they stayed with the momma cat. At 6-weeks of age we put an ad in the paper and started receiving inquiries. A woman and her two children came to see the kittens. They were petting each one, trying to decide which kitten to take, when out came Matt - stark naked - and jumped in the pool. I called for Tom and before he could get out the door, Matt had decided he needed to pee. He slipped past Tom, ran to the edge and let it fly. The woman mumbled something like, “We need to think about it” as she quickly hustled her children toward the driveway to escape. I found this to be extremely funny and started laughing. Tom laughed and Matt, hearing the joyous sound laughed too. His behavior had just been reinforced. He was controlling his bladder in the privacy of our yard. What harm could it do? Then some time in the middle of summer we decided to go to the local flea market. We gathered up the kids and Matt’s changing bag and headed out. Each child was looking at items on nearby tables, staying close enough so we could keep track. Matt stayed right with us. Tom and I were discussing an item we had found when I heard the sound. Matt had dropped his pants and was peeing right there, in the middle of a crowd! What could we do? He was in full stream. We looked at each other for only a moment. I moved to block the view, standing on one side, and Tom calmly moved to stand on the opposite side. Christopher and Jacob walked over and began to giggle, but taking a cue from us, moved to block the view. Sarah wandered over and seeing what was happening, just smiled and joined the ring. We managed to block any and all view of Matt or the stream. The entire crew worked like a well-oiled machine, and without words, came together to protect Matt. No one in the crowd seemed to notice. We decided to leave before anyone could say anything to counteract that assessment. It took all summer to get Matt to pee in the toilet. It took all summer to make him stop peeing off the deck (and he never again let loose in public). But we did it, and Matt was on his way to self control. Bowel movements were something quite different. First, Matt couldn’t figure out why a part of his body kept coming out. What was that nasty stuff? Sitting him on the toilet and waiting and waiting and then taking him off the toilet and cleaning him up seemed to take an hour each time. Matt would watch the water swirl with each flush. Where did that nasty stuff go? He evidently needed to explore this phenomenon. One day I found him in the bathroom, stuffing plastic links into the toilet. Plastic links are those brightly colored blocks of various shapes that link together to form long lines. Matt was trying to find out just how deep the hole in the toilet bowl went. He would shove the entire linked chain as hard as he could, then add a new link. We tried to remove them, but each pull resulted in a simple disconnect of a link. The blocks that were in the hole were wedged in tight. Tom finally had to take a blow torch to the toilet to melt them free. Of course, this was followed by clogging the toilet with toilet paper – an entire roll. Matt was learning to clean himself, but instead of using just enough, he became fascinated with the dissolving properties of the paper and just couldn’t stop. Another plumbing nightmare (and more would come). We became experts at plunging. Ah yes, potty training. We were both experienced parents when it came to potty training a child. But we were amateurs when it came to potty training an autistic child. We needed creativity, a great deal more patience and a sense of humor to pull through. The best part -if there can be such a thing? It’s finally over!

I do a lot of speaking engagements and I have been asked many questions about how I raised my son, Matt.  Many want to know how I was able to get my moderate / severe autistic child from a dire prognosis of institutionalization to his current independence.  Within that category is onequestion in particular that I have thought deeply on: How does a parent “let-go” of their child as they become an adult, knowing they could very well struggle or even fail? My answer?  You don’t. You just don’t let go – ever.  Instead, we, as parents must step aside to make room for our child to spread those wings of independence, little by little, every day.  Parents are naturally a cautious lot, ready to swoop in and catch our children or pick them up and brush them off when they fall, but we never really “let go”.  We don’t walk away just because we are not holding their hand.  We stay within a safe distance so we can help if needed and give hugs when wanted.  Stepping back, giving room, watching proudly as the wings unfold, that's our job, that's our mission.  We know those wings will carry them from the nest and away from us one day …. But even if the distance is great we haven’t “let go”. I would advise getting rid of that phrase, "letting go".  It feels bad, as if we dropped the ball or worse yet, abandoned our child in need.  Try using “giving him wings” instead.  It’s a positive, powerful phrase which states you are directing your energy toward teaching the skills for living freely, independently, as every human has a right to do.  Of course, with autism this can be a slower process than with a neurotypical child. The process can be so slow as to not notice even though you have already started – but you have.  “Giving him wings” is all about the tiny steps that happen slowly over many years…. The first step is to build up the wings – put the skills in place that can be used throughout a child’s life.  Skills such as learning to communicate, feeding themselves, walking alone, dressing themselves, and washing their hands. The list is as long as childhood. Every so often we then test those wings, feather by feather. One of my first big steps as a mom of an autistic child was simply letting him play without a constant eye on where he was and what he was doing.  Giving him time to be himself.  I never let go – I just moved out of his direct line of sight and listened to him play from around the corner of the door.  As I assured myself he was OK alone, that distance got longer, until I was watching him ride his big-wheel down the hill in the yard from my kitchen window. These simple acts are our first steps as parents toward giving our child some room – some independence. Some are bigger steps than others - like the first time I let him go to the bathroom alone in a public place. I worried the entire time he was out of sight and behind that ominous “Men’s” room door.  I worried because I imagined what could happen to him in the blink of an eye.   As he grew older his wants changed, just as they do for every child, and as those new wants arrived I found a way to make them happen.  He wanted clothes that matched his peers, he wanted to choose his attire all by himself.  I showed him how to pick a set of clothes for the next day and set them out for the next morning.  He had no problem taking over what had been up to that point, my job. These small desires, like picking his own clothes, were the stirrings of dreams . . . dreams of independence.  Did I let go of him as he took on this new chore?  No… I never let go.  I just gave him a little more space to test those wings. I remember the first sleep-over. As a video game ninja, I knew Matt would spend his night playing against his friend in a marathon gaming extravaganza. It would be all about the battles on the screen, drinking pop and eating junk food – all very normal desires and activities for a 13 year old.  But I worried.  I worried about him being alone if his friend tired of the game and went to bed.  I wondered if he would exhibit anger if he lost a game. I never slept a wink.  Matt made it home the next morning and went straight to bed – turned out he played the video game all night, long after his friend fell asleep.  He was tired – but immensely happy.  All that worry I experienced was well worth the smile on my son’s face. Want to hear another?  How about the first time I let him go shopping on his own in a store and how my husband and I hid behind corners to spy on him to see what he would do to assure ourselves he would be OK.  Matt was in seventh heaven as he strode past the various toys because he knew he could stop and look at anything he wanted, he could even pick up any one of those toys for a closer look, and he could choose which aisle to browse. That type of freedom brings with it confidence and empowerment.  Put yourself in his shoes.  Wouldn’t it feel great? Then there’s that parental need to prevent the fall, and never let them fail.  Of course we don’t want to see them fail, but we need to let them try something new even when failure is possible. Push their abilities a bit, see what they can do and what they can learn…. Lots of trial and error.  I remember Matt getting his first ATM card and teaching him how to use it.  How to look at a price, add tax and estimate if he had enough money on his card. And then, *gasp* I let him lose with it… knowing there was that possibility that he could rack up hundreds of dollars in overdraft fees if he didn’t understand how to use it or comprehend his limit on the available finances.  And yes, he failed a few times, he did get charged a few overdraft fees, but it was all worth it because it also presented “a teaching moment”.  You don’t yell, don’t go off the deep end –nope.  You teach.  You teach how it happened, and why.  Decisions have consequences - and what better way to teach that simple fact? I remember the first time he was able to order his own chicken nuggets at McDonald’s and years later, his own pizza at Lil Caesars.  The joy of ordering for himself could be seen clearly on his face.  Only little kids have their mom’s do it for them.  Matt felt empowered – simply by stating, “Yes” when asked if he wanted fries with that. Big steps, such as learning to tell time on his own watch, use his own cell phone, and even having his own bedroom were all big deals –and steps toward flexing those wings a bit more.  Empowerment and sheer happiness – that’s what came with each new endeavor – and I never did “let go”.  I watched year after year as he tested those beautiful wings.  I watched those wings get stronger with each new skill set, and regardless of just how strong those wings were getting, I still never let go. When Matt was a teenager he got into water that was way above his head and he panicked to the point of near drowning.  Smacking his hands and screaming “Help?” Matt unbelievably held on until I could reach him. I came up behind him and slipped my arms around his chest and repeated in his ear over and over, “I won’t let go, Matt, I won’t let go”.  My legs soon tired of treading water with our combined weight and I wondered if we would make it, if we would survive …. The operative word here was “WE” because there was no way I was ever going to let go….. Ever…..regardless of what possible future lay ahead.  I was able to keep us going until help arrived (Was it adrenalin?  Was it an inner strength?).  As I laid down that night and repeatedly replayed the events over and over in my mind and shed the tears of relief, one thing was certain – I knew, without a doubt, I never would’ve let go…. Ever. Matt is living in his own apartment now.  He’s transitioning with 5 days at his place and 2 days at mine.  I talk to him twice a day, every day.  I keep my eyes open for potential problems and fears.  I watch and I listen.  I’m ready to be there if and when he needs me.  With him living 20 minutes away you may think it’s time for me to let go – but that’s never gonna happen.  Matt is using his wings now – he’s flying.  I get to witness my son soar to new heights and feel the wind of freedom, real freedom.  But I haven’t let go.  I am still teaching him as much as I can, still trying to keep him focused on even more skills, and I am there for him –at any time - just in case an occasional storm pops up to knock him down.  It’s a parent thing. It’s not an autism parent thing, just a parent thing.  My other children, after all, are grown, and using their wings too.  They soar to new heights and enjoy the freedom of adulthood. If they need me, I’ll be there, and they know this.  For Matt, building his wings up, trying them out and now using them to fly has been a longer road, a more focused road, and at times a more difficult one, but he can do it.  I know, because I gave him wings, taught him to fly, and now he is experiencing the freedom he only dreamed of as achild.  And I did it all without once ever letting go.

Matt just attended the Labor Day Flea Market.  He just walked about, seeking just  the right find . . . just another bargain hunter in a sea of people that stretched from one end of town to the other . . . just one person of the 500,000 people who attended this year’s event . . . except, there was no “just” in any of it. Matt is 27 and moderate to severely autistic and mostly non-verbal.  And yet, he walked alone.  He bought some items that made him happy.  He blended in.  No one knew and no one needed to.  Matt was able to experience independence like never before. Just another day at the flea market - except it wasn't. Many people think autism is a just a communication and social interaction disorder.  For those individuals like my son Matt, autism is so much more than that.  Matt was diagnosed with autism so severe the professionals recommended institutionalization.  Basically, he was thought to be beyond my reach.  Little did his doctors realize just what this mom can do when she is put in such a position (one that many parents like me now know all too well) or about the indomitable spirit of those afflicted with autism. Over the years I knew his difficulties in social interaction arose out of his difficulties in communication - after all, one affects the other.  When my son, Matt, was just a toddler he kept to himself and never spoke a word but over the years I learned his non-verbal  language and he learned mine.  In the early years Matt feared even small gatherings of people.  He maintained a personal space that was much larger than most people’s, had melt downs, and cried when it got to be too much – but we never stopped trying. Little by little, year by year,  Matt accepted more and more people into his inner circle and even began to enjoy  their company.  There were always sporting events, picnics, fairs and flea markets – each which garnered large gatherings of people and year by year Matt was exposed to all of them. One event, the annual Labor Day Flea-Market, held in my husband’s home town of Hillsville, brought a massive sea of people together. They came from all over - vendor and bargain hunter alike - and it swelled over the years to encompass the entire town. The flea market has always been a big event for our small family and in spite of the crowds we took Matt.  We were mindful of his discomfort in those early years and usually carried him through the crowds on our backs or shoulders.  Matt eventually grew too heavy for carrying on my back and at some point he had to walk along side me holding my hand.  To entice him to go without a fuss we would bribe him with the promise of buying him a train and our entire family group kept an eye out for anything railroad related that could bring a smile to my youngest son’s face - anything to make the overwhelming nature of the flea market worth the over-stimulation. Year after year we went until one year we noticed Matt was eager to go. It just got better from there. We’ve been going to the Labor Day Flea Market now for over 20 years.  The week before this year's gathering I asked Matt if he would like to walk the flea market on his own – he beamed.  He could barely believe it.  This would be the year that he was finally allowed to walk alone, shop alone, go where he wanted to go, and just blend in.  That feeling of freedom must have been immense. I knew in my gut it was time and that he was ready.  I knew because I had prepared him for such things.  Matt had experienced shopping in stores alone for years now.  He goes one direction as I go another and when it comes time to go I call him on his cell phone. He also has experience purchasing items by himself, be it food or music, toys or clothes.  And Matt was excellent about knowing where he was at all times – as if he carried a map in his head (I am convinced my son has built in GPS). So I knew my son was ready because of practice – years and years of practice. The big question really, was I?  Was I ready to let go - even for 90 minutes - in a crowd so large? My son is also a man now.  A man that will soon live on his own – something unheard of in the autism community for someone on the moderate / severe end of the spectrum. It’s been a long awaited goal, practiced for since long before his high school graduation.  His determination drove my determination and together we knew he was ready to experience independence.  His name is currently on the waiting list for an apartment and we are just waiting for THE CALL - the call that will initiated the biggest move of my son’s life . . . and of mine. It’s been an exciting and yet scary year (exciting for Matt, scary for me). So yes, I knew Matt could walk the flea market alone (or I never would have asked him if he wanted to) because I knew in my heart he could.  But that does not mean I wasn’t scared.  Sometimes, this mom just needs to let go and have some faith.  This was one of those times. All summer long Matt reminded me how many days until the flea market on Labor Day weekend.  When I announced last week that he could walk it on his own his joy was overflowing.  To prepare him for the big day I took him shopping to buy him a new watch. Then we made sure his cell phone was charged.  Finally, we set a plan in motion of when to meet, how often to call, what to do if someone was mean to him (call me or get a cop).  I handed him his allowance for the day and off we went on a new and exciting adventure. Our first stop was to see grandma, who was recovering from surgery in a rehab center one town over from the flea market.  Unfortunately, while visiting her a severe storm warning came across the news and the skies turned black.  The rain fell in buckets and the wind bent trees just outside grandma’s window.  My heart sank.  I looked at Matt.  His heart was sinking too. My step daughter, Sarah, and her husband Paul had stopped by also.  Paul pulled out his smart phone and looked up the weather map.  Matt leaned in to examine the situation.  When we left I tried to convince my son it would be OK to go another day, but he wasn’t buying it.  As we drove out of town the rain lessened and Matt pointed skyward and exclaimed, “It’s going away!” “But another storm is coming, Matt.  You saw it on Paul’s phone, remember?”  I replied. “I see a fragment of blue!” he exclaimed and put his thumb and forefinger an inch apart as a measure of the blue and then thrust his measured hope at my face exclaiming, “A fragment!” “But what if it rains while we are there?”  I asked tentatively. “Duh . . . umbrella!” He said disgustedly. OK, so I had an umbrella in the back of the jeep. With each mile I drove toward home (and away from the flea market) Matt’s frustration escalated.  His frustration could not be contained a second longer and suddenly he smacked his thigh 4 times with the palm of his hand- pop, pop, pop, pop. Those pops meant his hopes of going it alone at the flea market were being dashed – and I was the cause. What was wrong with me?  Was I avoiding it for other reasons?  Was I …. Scared?   Shouldn’t I at least try to be as brave as my son? I pulled into a driveway and turned the jeep around.  “I would only do this for you I’ll have you know…” I teased as we headed back toward the town of Hillsville and the hope of the massive flea market.  I looked over and smiled.  “We will at least give it a try, Matt.”  With that statement came the resurgence of hope - his face re-lit with determination, and his eyes became bright once more. The traffic headed towards town was light but the traffic headed out was bumper to bumper.  Most shoppers were leaving, not wanting to bargain hunt in the rain.  We always park in the center of town and while I easily found a place to park (because so many people had left), it had still taken us almost an hour to finally get to that spot – 45 minutes waiting in town traffic and yet his face never shown of worry or frustration – only hope.  As soon as I cut the engine off, Matt grabbed the umbrella and jumped out.  We proceeded down the hill toward the first set of booths.  His step was so quick that I found myself trying to keep up with his strides.  Excitement permeated the air around him. “Check your watch. Call me in 30 minutes, OK?  Check your cell phone.  Let’s do a check.  Call me.” I asked, as if all was great and it was just another, normal day. As if.... “OK.” He replied as he took out his phone and pressed the buttons.  My phone rang.  I opened it, “Hello?” “Hi!” he exclaimed into his phone even though we stood next to each other. “OK, we’re good. Call me at 5pm and let me know where you are, please.” I said. “Uh, Ok.” He replied. “Bye, Matt.  Have a great time.” I said looking into his bright eyes. “Bye!”  Matt replied as he gave me a fist bump, turned and walked away  - and my heart stopped. What if?  Nope – get those “what ifs” out of your head, Liz. I reprimanded myself, turned and forced my legs to walk in the opposite direction.  For 15 minutes I strolled from booth to booth trying to look at various items but not really looking at anything at all.  I was too busy forcing myself to just keep going.  I rounded a corner, looked up and there he was, only 30 yards away. He looked right at me, smiled, waved excitedly, then turned and walked away once more. Believe it or not, that was all it took to calm me down – just seeing his face, reading his body language.  Matt was just fine. It was exactly what I needed to see - my 27 year old autistic son blending in with the massive crowd, confident, happy and living a dream.  I strolled off again in a different direction, more confident and more at ease. I set to really looking at things and examining items that were appealing and I started to relax. At 5 minutes before his first call was due my phone rang.  It was my husband.  “How’s it going?” he asked immediately.  Seems he was just as nervous as I had been 10 minutes earlier.  We talked a few minutes but I knew Matt would call exactly at 5pm and we kept the conversation short.  I hung up and strolled on.  At exactly 5pm Matt rang my cell phone. “Hello.”  I said with a happy voice as if nothing out of the ordinary was occurring.  I heard “Hello!” in an even happier voice in return. “Where are you?” I asked. “I’m at the Jockey Lot”, he replied. Great!  He knew his landmarks and I felt better knowing his internal GPS was working just fine.  We made plans to call again in 30 minutes. Thirty minutes later I again got my much needed call and we planned to meet up at the top of the hill in 30 minutes more.  I made record time to the top and then suffered the wait as I searched the sea of humanity for the light colored Virginia Tech hat he always wore. When I spotted him I noted that he was in search mode, looking this way and that, trying to spot my face.  I called out and waved.  He glanced in my direction and his face immediately changed from one of worry to one of sheer joy.  My heart began to beat once more. We walked together a while, ate some ice cream and slowly strolled back down the hill toward the car, walking side by side.  He stopped only once to show me a sign for comic books and I said I would help him find it the next day.  Finally, the jeep was in sight. We both let out a sigh of relief.  I opened the trunk to put in our bags and as I set my bag down Matt looked at me and asked, “What did you get?” I stood stunned for only a moment and then told him of the blue shawl with fringe as I pulled it from the bag to display it.  “That’s really cool!” he said as he put his own bags in the trunk next to mine.  Matt had NEVER asked me what I purchased before. Not ever.  His curiosity was as genuine as his approval.  As I walked to the driver’s side door I had to fight back a happy dance (with happy tears). Matt had just asked me about something important to me…..unexpected and out of the blue.  He had just initiated a conversation!  This was so much more than just a walk around the flea market. So, in all, Matt had spent 90 minutes on his own in the largest gathering I could have possibly subjected him to.  He did so confidently.  He knew his way around, purchased some items,and strolled as a free and independent young adult.  He blended in and got to feel “normal”.  My son is 27 years old and he deserves the right to feel just as free as any other 27 year old.  His 90 minutes on his own must have felt like heaven.   He was so relaxed and so calm upon our return to the car that he even verbally initiated a conversation (first ever).  Matt doesn’t initiate conversations – at least he didn’t until that moment. I can never say that phrase again..... The hurdles we face as parents of an autistic child seem never ending and maybe they are – but as his mom I say, “so what?”  I have learned to jump the hurdles with my son and now we tackle them almost effortlessly – almost.  We may plan for the big hurdles but we focus on the small ones right in front of us – because we know if we can jump those, we can get there – we can jump anything. On Labor Day two hurdles were cleared; he was able to prove to himself that he could function well in a crowd all on his own and he initiated a conversation with me without prompting. I would say it was a very successful day. We are very hopeful for Matt’s future.  I have learned to “just” breathe. “Just” relax – knowing that I can do this - whatever this is. It “just” takes practice.  When one thing doesn’t work, I “just” try something new.  And slowly over the years I have learned to “just” let go– bit by bit.   After all, it’s “just” autism. And there’s no “just” in any of it.