Kindergarten progress

Since we have reached winter break of the 2011-2012 school year, I wanted to include an update on how Diego is doing in school.

  

A big help for us are the new daily charts that are sent home with his communication notebook.  The staff staples a sheet in the book that details for us what he ate, his bathroom use (doing great!), which class or therapy he had that day, and at least one or two highlights of the day.  It is exactly the type of update I like to see since he is not able to relay all that info to us.  I think back to when I was young and my Dad asked us how school was every day and just saying “good” was not enough.  He wanted details and now I do too.

Diego is actually doing some basic addition and subtraction, writing numbers more clearly and had his first oral presentation just a few weeks ago.  He had to tell the class some of the highlights of a book they read.  From what I understand the teacher prompted him to answer some question about the book they read and he had to use a poster as his guide.  Reading continues to be a challenge as he mixes up some words and usually does not want to do that part of his homework.  The teacher also sent home a really cute CD with all the songs they use in class (days of the week, labeling with the alphabet and so on) to demonstrate just how much he has memorized.

I’ll be the first to admit that all that he has done has exceeded my expectations.  I thought when we met last April to prepare his goals for kindergarten that we had set a realistic standard for him and that he would be challenged.  I look at his paperwork and am delighted to say he is doing all we thought he might do and more!  He’s blowing the standard out of the water and I’m so proud of him… It is a testament to all the work he puts in and how well his teacher is guiding the class. 

As a side note, he now tells me “one secoooond” when I ask him to give me the iPad or my phone (he plays angry birds on my phone now too).  He also uses “whatever” in response to us and although many parents might be bothered we think it’s great as it illustrates just what many other kids his age are telling their parents…

Diego, 2011

In 2011, we witnessed some important progress as well as some major milestones for Diego.  He graduated from preschool in June, was enrolled in kindergarten in September and by the end of December had shown just how much he was learning in his new school program.  Despite a rather ominous start to his elementary-level education (a negative encounter we had with a school official at his Turning 5 meeting) we were both relieved and impressed to witness the effort by his teacher, aides and therapists.  This year’s teacher has done well with handling his transition issues and has made us feel comfortable with his placement.

So what has he been working on?  I included some shots of him practicing his handwriting (Handwriting without Tears worksheets!) and counting since I happened to be home for a few days at the end of the year while he did his homework.  It’s funny because I don’t remember having homework in kindergarten but we feel the continuation of the lesson at home is always helpful.  Also, you can see a shot of his newest PT / OT toy, his safety trampoline (handlebar attached) where he practices his jumping to a workout video… 

Adding his name at the top

The Buzz toy helps him think

Go Diego!

I sometimes refer to Diego and his younger brother (now 2.5 years old) as the Bash Brothers.  They will quickly go from playing together to fighting and then right back to laughing within minutes.  Just yesterday, after I intervened during one of their fights I decided to bring the little guy downstairs since they weren’t getting along.  As I carried him down he shouted “Bye Diego…I love you!” Their pretend play is really helping Diego practice some of the work he does during his group speech therapy sessions.

I know as we move forward and start preparing for his yearly IEP review in the spring that last year’s experience will only serve to help us as we continue to advocate for Diego.  All of his work and playtime at home that I described has made a really big impression on me.  I browse through his current IEP and see that he has already met and exceeded a lot of his goals.  He consistently surprises us with comments or some new skill or habit.  There is no limit to his potential and now we have to make sure we do not get in his way…  

Making his mark

Last week we had the honor of attending an art show opening that is displaying some really great work done by individuals with developmental delays and disabilities.  The Artshare for Heartshare event is now in its third year and is done to help raise much needed funds for the city-wide program that serves people of all ages with many different disabilities.  This was such a big night for our family because Diego had a drawing featured at the event!
As Diego's second and final year of preschool (2010-2011) was winding down, all of the children in his school were creating different art projects that the teachers and therapists were to vote on to determine which project would represent the school at the event.  We were so happy to find out that his drawing won and would be featured at an art studio in New York City!  After months of waiting, we finally got to go and meet some of the other artists and their families as well as see some amazing drawings, paintings and handmade jewelry.  Since we had not yet seen what he drew that day in school, we scanned the gallery looking for his name and we were amazed at what we saw:  

I remember when he wouldn’t even hold a writing utensil.  Now a picture he drew (“Sleepy Hollow” is the title) is up on display at an art gallery.  To see that picture hanging there is a testimony to his ability, talent and resiliency.  As proud and happy as we felt to be there, I was blown away by some comments that one of his former therapists made to us as we were discussing Diego’s time at the school.  She told us how everyone at his old school really misses him and they often speak about him, his sense of humor and how he is someone who really left his mark.  We could not agree more.

Wit and Wisdom compilation

Today, September 20, 2011, Wit and Wisdom from the Parents of Special Needs Kids is being released.  This book is a compilation of stories written by parents that are dedicated to making a difference, and I am one of the authors featured in the publication.  As many of you know, my older son Diego was diagnosed with autism in 2008 and I am committed to sharing our story to bring about change.  By that I mean a shift in how we both perceive and act towards people that posses a different way of thinking.  The other contributors to this anthology are special needs parents just like me, relating their experiences of life with their exceptional children.  The book is available for purchase at Amazon.com, and I invite you to come discover the world of special needs parents and support our cause by purchasing a copy.  Click here or on the link provided on the right side of this page and you will be directed to the page at Amazon.

When I was originally invited to participate in this project, there were a few ideas I was kicking around, trying to decide which particular topic I wanted to discuss.  A few weeks later, the decision was made for me.  We had just attended a meeting to discuss Diego’s placement for kindergarten for the upcoming school year.  During our meeting, the education official (who was actually a school psychologist) made some very negative comments, leaving me to wonder how someone working in that capacity could know so little about autism.  I left that meeting saddened by the way he spoke about Diego’s future but determined not to dwell on the negativity.  Later that same day I decided that my entry in the book would be about our encounter that morning.  That story and everything else I write is intended to foster hope for the future by slowly chipping away at what seems to be a mountain of ignorance that exists in regard to intellectual disabilities and autism in particular.

Moving forward

In a little more than two weeks Diego will begin his kindergarten program, the culmination of a tumultuous Turning 5 process that was anything but smooth.  Those issues, having finally been resolved are for another story.  Here I want to mark the momentous occasion by sharing a few photos of our son from this past weekend.  I was standing behind him as he started to run through the sprinklers at the park.  I quickly grabbed my phone to get some action shots as I felt they perfectly captured our situation.  Here is Diego, plowing ahead despite everything that may try and hold him back.  Although he craves routine, he has just enough of an adventurous streak in him to try something new.  Plus he loves the water!  

I continue to marvel at his progress and more importantly his potential.  I know he possesses all the pre-academic skills he will need for the upcoming school year and we will closely monitor the new school, teachers and therapists to ensure he gets the type of help he needs.  For now, we will enjoy the few weeks he has before school starts and try to convince ourselves we are not nervous about sending the little guy off to kindergarten…

    

Graduating from preschool

In just a few days Diego will finish his two year preschool program.  That in itself is a major accomplishment for our son, a sweet little boy that struggled to sit still and focus on tasks and made requests using one-word approximations and hand gestures.  Now with two years of preschool we have witnessed so many positive changes and have marveled at his ability to use language more consistently.  As I look back to the few months that preceded his enrollment in preschool, I remember just how nervous we were about sending him.  When originally touring schools in the spring and summer of 2009, the program we ended up choosing for him stood out because of the staff.  We felt welcome right from the start.  Despite our anxiety about how he would handle the separation from us during the day, we felt Diego would receive excellent care and that definitely turned out to be true.  We will be forever grateful to his teacher, aides and therapists for all their hard work.

As an example of just how much progress he has made, I’m going to include the following story:

Not too long ago I used to wonder when Diego would start calling me by name.  Would he use “Dad” or “Daddy”?  Perhaps even “Papá”.  I knew whatever he decided would be fine by me and since he turned 5 this year I figured it was only a matter of time before he began to use one of them.  Sure enough, one afternoon at the end of April we were getting ready to leave for music class and Diego said “Daddy” for the first time without prompting!  He wanted me to hurry up and put my shoes on so we could leave.  I know I’ll never forget that moment, I ran up and gave him a high five and then started hugging him.  I was beaming with joy the rest of the day.  It took five years but that feeling I had was more than worth the wait. 

Special needs preschool

There are some schools out there that are making a difference in the lives of special needs kids and their families. Our son is in preschool and while I know there may be classes in the future that are not as helpful and accommodating as the one he is in now, I wanted to illustrate how dedicated the staff has been with Diego and our family.

I have a page up over at Examiner and click here to read about his school.

Preparing for the IEP

We are currently preparing for an IEP meeting.  Our son will be moving on to Kindergarten in the fall and transitioning out of the preschool special needs program and into a whole new system.  Naturally I am nervous about the process since this will mean a larger school, new teachers and a complete change in his routine.  Diego has autism and for the foreseeable future will require a separate, special education class to meet his needs.   I don’t feel comfortable with professional people who do not really know my son making decisions that will be so important to his educational, emotional and social development.  Therefore I am preparing for the meeting by becoming familiar with special needs education, my son’s rights and the new program he will become a part of in the near future. 

I felt it would be a good idea to put my thoughts down in an open letter to the board of education officials that will be helping to make the decision on his school placement and the amount and types of therapies he will receive next school year.

To Whom It May Concern:

I realize that with the number of students in the area set to receive special education related services that it can be easy to view our son as just another case number.  While the progress reports, last year’s IEP and the new evaluations you have in his file are very good indicators of Diego’s skills and his progress to this point, we feel that it is our input as his parents that will most likely fill the gaps and answer any questions as to the services he would benefit the most from throughout the upcoming school year.  The first instinct for you as the professionals will be to point out that we are unable to objectively view our son’s case because of our strong emotional ties to his education and how every parent that advocates for their child cannot reasonably expect to get everything they want from their school system.  That is a fair argument but we as his parents know Diego better than anyone else in the world.  We have watched him struggle with his speech, sensory issues and intense fears.  Since we have seen the tactics and therapies that have worked well throughout his Early Intervention and preschool years, it is vital that we be treated as equal partners in the design of his Kindergarten program that begins in September of 2011.  At the upcoming IEP meeting I know we cannot fully express just how much we have been through with Diego up to this point in his life but we are looking forward to working with you to help mold his educational foundation.  If even a fraction of our love, commitment and hope for Diego’s continued progress shows through when we meet then I trust we will be able to come to an agreement to create the plan that benefits our son and ensures his continued success for the future.

Focusing on our son's health

Today I am a guest blogger over at "I'm Just That Way and That's Just Me", a wonderful blog edited by another special needs parent, Dani G.  She is the mother of a sweet little girl who, like my son, has autism...

Even though I will remember 2010 for progress that Diego has made, I will also remember some scary moments, hospital visits and ear infections.  In order to move forward and focus on helping him, I wanted to take the time to reflect on some of the concerns and tough moments of this past year.  We know 2011 will be bigger and better! Please click here to read my post...

Emotional reactions to autism

I have always held on to the belief that you can tell a lot about a person by how they respond to adversity. I used to be able to say that I work well under pressure and was able to remain calm when presented with different challenges throughout my life.  That was in the past though, before I was met with a far greater challenge and all of that toughness started to go out the window when confronted with autism.  Now if you see me, you may notice I tend to walk with my head down or seem to have a distant look in my eyes.  These are both sure indications that my thoughts are elsewhere.  I often have trouble focusing on something when I know my son is sick or having a hard time adjusting to a change in his schedule. 

When I watched my older son struggle through his acid reflux problems and crying fits as a baby, a part of me was affected in a way I didn’t know possible.  He just couldn’t get comfortable.  That was only the beginning.  Then as he grew older we noticed his lack of speech along with the extreme sensory issues. All of this was accompanied by tantrums.  I don’t know of a single day the past four and a half years where there wasn’t something to worry over or obsess about.  From the illnesses, doctor appointments and evaluations to crying fits, tantrums and frustration for all involved, I now have a hard time imagining a time or a place where autism was not in my life or a part of my everyday thinking.

I’ve discussed this before and I will reiterate the same idea again, what happens when you become so involved with autism and helping your child that you have a hard time connecting with others that are not affected?  Is that something that other parents of children on the spectrum are concerned with?  Does that make me a bad son, brother or husband if I fail to connect with family because I am too focused on special needs?
 
As a special needs parent I know there are people out there who think less of my son and feel the need to remind others that they do not approve of certain behaviors associated with autism. They may even label him different, call him slow or see his disability above all else.  Seeing and experiencing these type of discriminatory actions is something that causes me a lot of sadness and frustration. When it happens I sometimes feel like I got hit with a sucker punch and the wind has been knocked out of me.  I am unable to focus on anything and in that moment I struggle to try and find some way to channel that anger into something positive.  I just sit there and wonder why is it so hard for special needs parents and families to find compassion and patience from others.

My experience these past four years as a father of a child on the spectrum has done something rather unexpected.  It has completely destroyed the wall I had built around my feelings.  I now allow myself to experience as well as show others a full range of emotions and I have moved past the notion that I should show indifference or stoicism.  Going forward as we continue to advocate on our son's behalf we will be faced with a whole new set of challenges.  We will be prepared for some but not all of life's adventures.  I will run through a gauntlet of emotions and for the first time in a very long time it doesn't bother me who knows it.

Teaming up with another special needs Dad

The majority of the blogs out there that focus on parenting and raising special needs kids in particular are written by moms.  I have met a few other fathers of special needs kids through my son's school and also networking on Twitter.  One dad in particular, Stuart Duncan (Twitter: @autismfather) has a pretty cool and informative site dedicated to his family's journey with autism.  I have a link here on my page that will direct you to his site (Check out the Blog List on the right).  Once he sent out a message looking for guest writers, I decided I would like to contribute.  Please click here to read my first post...

Battling the 'normal' mindset

I've always been bothered by the expression, "Things are back to normal", mostly because of the last word in the sentence (I won't use the word but for the sake of this post I'll make an exception).  Also I'm not sure but it seems it could be a substitute for "I like my routine and while at times it may vary, please don't do or say anything that calls my perception of normalcy into question".  I suppose my stance comes from cultural relativity more than anything.  It is important to respect other practices and beliefs because with all the different languages and religions around the world you should keep in mind that what you do or say may look weird to someone raised under another set of ideals.

How does this relate to autism?  Well, some of the stuff my son does would cause many to start the "that's weird" or "that's not normal" rants.  I believe that those phrases are helping to reinforce discriminatory views across the board.  It is ridiculous to think that what you say or do is 'normal' and when someone either acts or speaks differently than they are 'abnormal' or 'weird'.

This causes families dealing with developmental delays such as autism quite a lot of stress and worrying.  Not only are we trying to teach our children skills so they can catch up to their peers but we are also forced to deal with people who think our kids shouldn't even be in the same class as their son or daughter.  As if just by being in the room, a child with autism is going to cause other students to begin to struggle academically and socially.   This is something that causes me a lot of anguish.  No one really knows what goes on behind the scenes.  I don't know how much work you or anyone else puts in to help their child.  I cannot know because I'm not there.    As far as my son is concerned, nobody was around to see all the work he has put in to learn limited language skills and how to use the bathroom.  What about how long and hard he, his parents and his therapists worked just to get him to sit at a table and focus on the task at hand?  As far as we're concerned we aren't trying to normalize anyone.  In fact we are lucky to have a special person in our lives and we are helping guide our son on his journey as he acquires skills needed to make his life as fulfilling as possible.  I would also like to add that Diego is funny, sweet, and overall an awesome boy!  So you can keep your 'normal' tag, we don't want or need it.

Picture this

I've written about it before and here are two examples...what is going through his mind?  He has always loved bubbles and this bubble exhibit at a children's museum we visited was a dream come true for him!

The Tecpanecatl Family and 30 Stories in 30 Days

Today is the big day! My letter giving background information on our son and his sensory issues has posted at http://www.hartleysboys.com/ !!


Please visit the site and look for story #7 about the Tecpanecatl Family, “A Gentle Boy with a Giant Fear” and leave a comment or question and I will be more than happy to respond. Our experience has opened our eyes and more importantly our hearts to the struggles of all families dealing with developmental delays and Sensory Processing Disorder. I am doing my part to spread knowledge so that we can remove negative stereotypes associated with the disorders and allow everyone to receive access to the therapies and services needed to help them on their journey. Thank you Hartley (@ParentingSPD) for allowing me to share our story.

If I could only catch a glimpse

I often think how helpful it would be if I could view the world from my son's perspective.  If I had a few hours or a day even, I would finally understand how certain sounds feel to his ears, how he interprets language and find out what type of thinker he is.  Why do I bother to think about something that isn't even possible?  During a recent conversation I had with my sister I mentioned to her how much the average person takes things for granted.  Take a typical day, from the time you wake up until the time you go to sleep and stop and think how you would function if you perceived the world differently.  Imagine if all of the sights and sounds and sensations were scrambled.  Even if there was only a slight jumbling involved, the results would alter everything about you and how you handled yourself.  I told my sister that once he is able to tell us, we will finally know how our son views his surroundings.  Please let the words start flowing.

Before he was able to use any words, our days were filled with a lot of guessing and we weren't right all the time.  He was frustrated and it was (is) hard to see him upset.  Most of my responses when I'm asked why he reacts a certain way start with "I think..." , "I'm not sure but most likely..." or "Probably because..."  Do you see a pattern there?  A lot of guessing is involved.

After I try to put myself in his shoes for a moment I stop and think if I really do want to see the world as he does for any amount of time.  Would I be afraid of what I saw or felt?  Could I ever look at the world the same again as I would constantly feel sorrow and pain for what my son experiences on a daily basis?  Would I ever be able to stop worrying about him?  Who am I kidding?  To some extent, all of that is already true.  

SPD and 30 Stories in 30 Days

Hartley Steiner, a wonderful advocate for Sensory Processing Disorder (SPD), has put together a month long event to help raise awareness for SPD.  Her "30 Stories in 30 Days" campaign will feature a collection of stories from parents and professionals about their experience with SPD and the many challenges that the individual and their families face on a daily basis.  Please click to view the background for the event as well as the amazing prizes people can win.

The fundraiser also aims to procure donations for the SPD Foundation and I have added a widget to the upper corner of my blog (see it over there at the right?) which makes it easy to donate to this great cause.

I am excited to have an entry featured for this project and it will be posted the morning of October 7.  Writing the story was emotional for me and I trust that people will get a good sense of how much our son's sensory issues have impacted our lives.  I am proud to be a part of the event and hope you will find the time to read all of the stories that are featured.   

I believe we can handle it

"But can we handle it
could we dismantle it
or should we fear the void
and just be para-paranoid?
if it's understood
it could be used for good, and would
if you will believe in
all we can conceive"

The lines above are exceptional lyrics from 311off of their Soundsystem album. As I heard the words the other day it dawned on me how much they can apply to spreading autism awareness and helping people understand more about the disorder. (This is from the song “Evolution” and yes, I listen to music that many would consider old at this point but I don’t care)

First the "But can we handle it?" lyric could be the question a parent asks themselves over and over as they navigate the autism journey. There will be days when you just want a break, to shut things out for a few hours but that is not our reality. The challenges are everywhere but so are the fun and the silly times and with each accomplishment you and your child will feel pure joy. As an advocate, are we able to maintain our stance in the face of adversity? When opposing opinions are presented and our views threatened, can we persevere and handle ourselves accordingly?

What about the line, "Could we dismantle it?" One of my goals is to help dismantle negative stereotypes associated with autism so people can see past the perceived differences and recognize they are interacting with another human being. Maybe they have a speech delay or lack of social skills but if you just give the person a chance, they may just amaze you with all they have to offer. I know I would also like to break down the walls that currently surround my son's voice, finally allowing him to share with us his thoughts, the things that make him happy, sad and afraid. I know that it will happen but I get anxious waiting…

Next up is the lyric, “should we fear the void and just be paranoid?” If we allow ourselves to cave under the pressure, who will stand up for our children? Can anyone else really know your son or daughter as well as you do? There will be difficult times but we should do what we can to conquer our fear of the unknown.

Read this line again:
“If it’s understood it could be used for good, and would if you will believe in all we can conceive”

Amazing. Think about this for a minute. I bet many of you know someone with autism. Maybe your son or daughter has been diagnosed. Or a grandchild, sibling, niece or nephew. It could even be a friend or neighbor.  I implore everyone to take the time to learn about autism and to help educate others.  Together the autism community and its advocates can make a difference. As more people are recruited to joint the fight to help bring about significant change, then all those affected by autism can begin to access the services needed to set them on the path to success. The first step will be to believe in all that can be accomplished…

At the end the song they answer the questions:
"Yes we can handle it
we could dismantle it
we should not fear the void
and just be para-paranoid
if it's understood
it could be used for good, and would
if you will believe in
all we can conceive"

Our ultimate autism warrior mom

Jessy,
Our journey together has been filled with an abundance of love and laughter. I was apprehensive about moving to New York on my own and working in Manhattan, even on a temporary basis. Coming from the Midwest I was unsure of what to expect and was quickly overwhelmed with all the commotion and speed of the city. What are the chances that you and I would meet and under the circumstances in which we did?

Our lives have also been touched in a way I never thought possible. Despite the challenges of raising a child with autism, Diego has taught us so much more about ourselves and life in general. We face each obstacle together and our two sons are extremely fortunate to have such a caring and compassionate mom. Your patience, support and determination to help Diego are the qualities that make you our ultimate autism warrior mom.

Special needs parenting has proven to be difficult but with each round of tears also comes the joy of seeing our son make significant progress. Today I am reaching out to simply say one thing to you: THANK YOU! Thank you for bringing your hope, love and guidance into the kid's daily lives. Thank you for always knowing what to do and say when the kids are upset or sad. Finally, thank you for being there for this special needs father, as I spread awareness, acceptance, and knowledge of autism on behalf of our beautiful son, Diego.
Happy anniversary!
Love,
Lou

Hope for Autism

Recently, I began posting updates through Twitter with the hashtag #HopeForAutism.  I decided I would use this in order to post some hopes and dreams I had about the future of all those affected by autism.  Just as with any major shift in ideology, there are those that will impede progress, and there are also quite a few people that will help bring about positive change.  I want to be a part of the latter, spreading a message that inspires others to learn and understand more about this puzzling disorder.

I feel that creating more awareness has to be coupled with more knowledge as well.  Just because someone knows I have a child with autism does not mean they truly understand all that much of what we go through.  Even if I suggest they read a book on the subject how can they really know what it feels like to watch their son or daughter struggle to speak or fight through the sensory issues?  Well, one way to start is to cite specific goals for both my son and the autism community as a whole so that other people can begin to catch a glimpse into our lives.  By talking about my hope for autism I want to help people put aside their fears of the disorder and begin to embrace this segment of the population that has so much to offer.

Will you join me and spread some #HopeForAutism? 

Autism is not Invisible Anymore

Christmas usually means a day of relaxation and family meals. Last year, we decided to visit my parents in Ohio and we booked a flight on Christmas Day. We knew in advance that flying with our older son, Diego, was going to be stressful because he may feel the need to get out of his seat to walk around and we were not sure how he would handle the airport crowd. We arrived well in advance of our departure in order to check our luggage and to make sure the kids had a chance to eat. Things were going relatively well until we got to the security checkpoint. I was in charge of keeping him from getting out of line and running somewhere else. My wife and I frantically unloaded the stroller and removed the baby's jacket and shoes (he is six months old at the time and this seems ridiculous to me but we were told to remove his shoes as well) and threw all our stuff into bins. I collapsed the stroller and quickly put that up so it could go through the x-ray machine. I knew I needed to hurry in order to prevent a major meltdown but I already felt the control we had over the situation fading fast. Our nemesis that morning as we had anticipated was the metal detector. Up first is my wife, who goes through holding the baby. That leaves Diego standing by himself and waiting for one of us to help him, as he is unsure what to do next. I curse under my breath knowing I took a few extra seconds we did not have getting that stroller up on the conveyor belt. My wife, not realizing I had a delay getting our things to fit through the machine, turns to see me just walking up to help Diego. The security officer insists he must pass through the metal detector on his own. We try to explain he is unable to follow the command because he is mostly non-verbal and needs our assistance. He is already visibly upset at the shoe removal process and the entire airport scene in general. So what does he do? He throws himself on the floor in front of the metal detector and screams and cries. Miraculously, this forces the guard to realize that, on second thought, yes we probably should help him through since we are holding up the angry mob of people in line behind us trying to catch their flights. One guy in line decided to run past and ask as he passed by, “Do you mind if I go ahead?” Did he think I was going to try and stop him and cause an even bigger scene? After a few failed attempts we somehow manage to help him through, collect our things and proceed to the gate. Things didn’t necessarily calm down as we arrived at the departing gate. I imagine it was all the wide open space calling his name because as we wait to board the plane, our son refuses to do anything but run from gate to gate, pausing every now and then to make sure I am following right behind.


In August of 2008, Diego was diagnosed with an Autism Spectrum Disorder. Along the way I have noticed the impolite stares directed at my son when he is having a tantrum in a public setting, just as the one described above. I would imagine the people who look at us in that way believe my wife and I to be bad parents, and that his behavior is a direct reflection of our failure to properly discipline our child. What they do not know is that my son has an extremely hard time transitioning from one activity to the next. They also are missing another important piece of information regarding my son; at age three he lost his voice for a period of three weeks because he developed calluses on his vocal cords. Since he struggles with a significant speech delay and has had trouble expressing his wants and needs, he screams out in frustration. After repeated bouts of yelling he began to lose his voice. The throat specialist we visited, who spoke to us without even realizing the irony of his comments, told us we should try and curtail his screaming. I practically fell off the chair. What did he think we were trying to do? We are constantly trying to find ways to help him improve his communicative skills so he does not have to yell. Yet, mid-tantrum, we are doing our best to handle the situation in order to prevent any further escalation of anger and screaming. To turn our focus away from him when he is the most vulnerable is not going to help diffuse the situation. Therefore, if I allow myself to be overcome with anger at their lack of understanding autism and how it affects my son, then I am not concentrating on him and his needs at that time. Afterwards, when we he has calmed down and we return home, or during other quiet times, I look back and think about how our son’s actions were perceived by others around him. The looks have become more frequent as my son has gotten older; he is now four years old but is big for his age. I fear that as he matures and his behavioral issues continue people will become even less tolerant of any stimming activity or tantrums.

I have often heard autism described as an ‘invisible’ disability. I certainly understand the idea behind that description, but it is not something I can actually embrace. It is not invisible to me because my family experiences autism on a daily basis. For me it is everywhere, and I’m sure there are many other families that feel the same way. It is a disorder that has prevented my son from being able to tell us when he is sick and causes him to shut down if he is over-stimulated. Yet, for the majority of the population someone is only identified as ‘disabled’ if they are confined to a wheelchair, or if their disability is noticeable upon first glance. It seems to me that most people need to be able to identify the ‘difference’ as it serves to reinforce their view of society. If something comes along to upset this delicate balance than they begin to question their ideals, leaving them confused as how they should react. Many people in this country may never have any interaction with a developmentally-disabled individual. Their view of autism may be seen as someone else’s struggle, as a small segment of the population being helped along the way by their parents and a team of therapists and teachers. However, as many of you already know, the number of children being diagnosed is constantly increasing, and more and more people will be forced to deal with this issue as it begins to affect their own family and friends. This is what makes autism awareness so important. The issue needs to be brought into the mainstream so that people are able to recognize the early signs of autism and to also create a better overall understanding of the disorder. Most people know about cancer, AIDS, diabetes and other serious medical conditions, but how many people who are not directly affected by autism know much about it? Not many. That has to change.