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.

People Should Stop Using the 'R' Word

There are still too many people using words that reinforce the negative stereotypes of all who struggle with disabilities. I have made an effort to avoid using certain words because they can be derogatory in nature and they undermine the efforts of all those fighting for awareness. Just the other day I overheard a conversation on the train involving the ‘R word’. These incidents always leave me both frustrated and upset at how easily people forget just how hurtful their words can be to all individuals struggling with physical and developmental delays. The term is used so loosely and it seems people either do not realize or simply do not care that the individual or family and friends of those affected may be standing nearby. I do not think people should use the word as a joke, which is exactly how the young lady on the train was using the term.

As a special needs parent, when I hear the ‘R word’ I am reminded how much more progress is still needed on the awareness front. I would imagine if all those who use the word could experience what we do on a daily basis, they may reconsider their choice of vocabulary. Since my son struggles with a significant speech delay, sensory related issues, and behavioral problems (tantrums), please do not be surprised if I refuse to laugh at a joke that seeks to further marginalize him and all those on the autistic spectrum. If others could see the look of fear and anguish on my son’s face at the doctor’s office or when he experiences a meltdown transitioning from one activity to the next, perhaps they would agree with me. How else can people really understand unless they experience the daily struggles of a special needs family? If I explain to them that they should not use the word and it is hurtful, they may feel bad for a short time and then forget all about my son or my situation a few hours later. I would like to think that as more people stand up for individuals affected by a disability, then the more people will begin to understand that our use of language is essentially ‘de-humanizing’ a portion of our society.

What do you think? The next time you hear someone using this offensive word, will you bring it to their attention?

Echolalia - "Are you okay?"

One of our son's biggest hurdles along the way has been his speech. He would refuse to work with his speech therapists during our time with Ealry Intervention and what little work they managed to get out of him was done through tears. We changed therapists a few times to try and find one he worked better with but the sessions were not that much better. He would save the biggest and most severe tantrums for the speech therapists. He would force himself to vomit at the beginning of every session. While we knew he had a speech delay it became apparent that even the thought of having to speak would get him angry. How could we get him to even make one word requests? If we could get him to use "eat" or "tired" or "juice", that would have made a world of difference. We had to guess at what he wanted most of the time because he wouldn't use any words. If we guessed wrong he would scream and cry. He was as frustrated as we were because we weren't always able to guess correctly.

After a lot of work and even more patience he began to repeat a few words in order to get what he wanted. "Juice" became our favorite word because it was the one he used first and it represented a major breakthrough in his speaking abilities. That and "movie" were the extent of his spontaneous speech, which makes sense because those were and continue to be his two favorite things in the world. What also became evident very early on was that Diego is echolalic, as I'm sure many other parents of children with autism have discovered about their own kids. He repeats the word "say" when prompted by my wife and I to "Say please" or "Say thank you..." When given a food item or toy he does not want he will say to us, "You don't want it?" in the form of a question because he has heard us repeatedly ask him this. For a long time after tripping, or throwing himself down when upset he would exlcaim, "Are you okay?!?" since we usually ask him that after he falls down. After a few months he would also add, "You're fine" before getting up and going on his way. He essentially took the question and encouraging comments we used and spoke them out loud for us because as far as he knows that is what one is supposed to say when that happens.

Our son has made quite a bit of progress with his speech based on where he was at the time of his diagnosis two years ago. Some of the phrases he now uses are: "need help", "eat food", "I want juice", "go down slide" (meaning he wants to go to the park) "more tickle" "hug" "bye bye car" and "where's mama" (the only time he will call either of us by name). We are beyond thrilled with all of this progress! Like jumping up and down excited! Yet I can't help but worry that the echolalia may cause problems in the future because he may come across as antagonistic if he repeats what someone tells him. I've heard stories about cops stopping an individual with autism and asking questions only to have their questions repeated back. At that point the cops treated the person as hostile and a scuffle ensued. That bothers me. So I wonder, how will his speech continue to develop? What other tactics can we use to help him with his echolalia? Will he continue to make positive strides in spontaneous speech?

A glimpse into the future

I often worry about what the future holds for my son. In a lot of ways it can be hard to picture him as an adult as we are currently focusing on potty training, having him make verbal requests, and trying to reduce the tantrums. It is almost like an oasis, the fact that he will one day hold a conversation with us or be able to tell me if he is in pain or something is bothering him. I can’t wait! I know the time is coming but the road there is and has been a long and arduous one. I want to be able to ease his discomfort at the doctor or when he gets a haircut because these trigger such angry and upsetting responses from him. Most of all I wish I could take away that fear…

A recent event really got me thinking about the future of not just my son, but for all children on the spectrum:

On my way home from work this past Friday I stopped in to pick up some Chinese food to bring home for dinner. It was really warm inside the restaurant and I noticed a few people had ordered and were waiting outside for their food (even though it was hot outside as well). I decided to wait inside by the fan and realized that a young woman was actually sitting there eating and suffering in the heat. Another woman waiting outside was talking on her cell phone but would periodically walk in and turn right back around to go outside. I figured she was waiting for her order as well. Then, about 10 minutes later, this woman (still on the phone) came in and very rudely spoke to the young lady about whether or not she was finished with her meal. She demanded to see how much was left in the container and scolded her for eating so little.

“Do you want to take this home?”, she asked, and the young lady must have said yes because she took the food away and placed it in a bag and started to leave. I heard the woman say, “Take the tray up to the counter” and then she walked out, but not before shouting, “Hurry up!” I realized this woman was an aide of some sort, tasked with assisting the younger woman with daily activities. I was appalled at the way in which she was treated and I was immediately overcome with such a feeling of dread and sadness. How could she speak that way to the person she was supposedly helping? Is this a common occurrence in the care of individuals with special needs? It was so hot in there and she was just sitting there all alone…

I know there has been a lot of progress in raising awareness for autism but there is so much more work left to be done. As children with autism grow up, some will require the help of an aide or other service to help them live a more fulfilling life. We need trained educators and professionals to assist them. As a parent of a child with autism I know that I have to fight for him to get the services and individualized education plan that he needs. For now, my wife and I are his voice, and we use it to help obtain the classes, therapy and resources that will assist him in his development. It is amazing to read and hear about all the parents out there advocating for their children and their needs. I hope that by raising awareness, no one else will have to be subjected to the same treatment as that young woman in the restaurant. I take solace in the fact that with all of our combined efforts we are helping to change the future of autism for not just our own children but also those of the next generation.

Worlds Collide

I spend a lot of my 'free time' reading and learning as much as I can about autism. I avidly read blog postings, books, articles, and Twitter updates in an attempt to understand what my son goes through on a daily basis. I remember leaving the neurologist's office the day we received the diagnosis and I knew what I had to do. I would have to educate myself, but it has never really felt like homework. The process has always been enlightening and I have to say I truly enjoy learning new things on a daily basis. It's amazing to see all the networking capabilities that we can now use to our advantage. Parents in similar situations reaching out for help or to share their children's latest accomplishments are what I find helps me the most on an emotional level. The challenges that my wife and I face are not unique even though there are times when we feel we are all alone and up against this baffling disorder.

I did not know much, if anything, about autism when Diego was diagnosed in 2008. Now things like echolalia, occupational and speech therapy, tantrums, ABA, TEACCH, and IEPs are all a big part of our family life. I feel so proud when he makes progress and we love celebrating all of his achievements, big and small. The speech has been extremely hard for him but he is making progress.
So now that I have immersed myself in his world I can find it difficult to relate to parents of 'typically developing' children. Our daily lives are just so different on almost every level.

It is ironic that as much as I am trying to pull my son out of his own world and into ours, I am drawn more and more into the world of autism...

The spectrum

From the time we received my son's diagnosis in 2008 I have spent quite a bit of time reading about and researching autism. One of the first things I learned was that this is a spectrum disorder which affects each individual in a different way. This also means that people on the spectrum have a wide range of abilities and many excel in their particular area of interest. In our case I see how remarkable our son's memory is and how aware he can be of his surroundings at any given time. He just turned 4 and while we are unable to hold a conversation with him, his spontaneous speech is picking up and he will request certain items throughout the day. In many ways our boy is just like other typically developing 4 year olds becoming a little more independent as he gets older.

This brings me to the point I wanted to make on the idea of spectrums. Aren't we all on a spectrum of some sort and not just individuals affected by autism? I have strengths and weaknesses just like anyone else and everyone has a unique set of talents. Once we start going to school we are graded on our performance and we all end up at different levels academically. Once we enter the workforce there are those that earn quite a bit money in their careers, there are some who earn very little, and many of us end up somewhere in the middle of the financial spectrum. The challenges that individuals with autism and their families face can be difficult, frustrating, and at times daunting. However, I feel that as a society we should really try and celebrate the many different contributions that we all make to this world. Instead of ostracizing groups of people for perceived differences we should embrace them. We are all part of one giant spectrum with many different abilities, beliefs, and customs. As a father to a child with autism I think it is important for others who are not really aware of the disorder to try and look through the diagnosis. My advice to them is to try and focus on the person and not just a behavior that may be seem odd or inappropriate. We want the best for our children and most of all we want them to be accepted by their peers. Whatever abilities a person has they can find a way to contribute in a positive way that can enrich their lives. We all learn at different rates, and we speak many different languages, and just because at this point in time my son is unable to carry on a conversation it does not mean he is unable to communicate with his family. He just does it different than most…

Autism Speaks walk event

This past Sunday, June 13th, 2010 we participated in the Walk Now for Autism Speaks event held in downtown Manhattan. I have to say it was amazing to see how many people were there united for this cause and with the belief that we will one day unlock the mysteries of autism.

Quite a few people had t-shirts made for the event with pictures of their family member affected by the disorder and some with inspirational quotes geared towards autism and its effect on families. I was particularly struck by one team's t-shirt with the following quote from Temple Grandin, PH.D. (for those who do not know her, she is an autistic woman widely noted for her autism advocacy) It simply stated, “I am different, not less.” My only advice is that the next time you see a child acting out or having a temper tantrum, or who appears to be misbehaving in public, please keep in mind this child may suffer from an Autism Spectrum Disorder and may not be able to control their response in certain situations. Try and look through the actions and see the person, just like us, struggling inside.

Memorial Weekend trip

For Memorial Day Weekend we took a road trip to see my parents in Ohio. Strangely enough, in the time leading up to our departure we were a little more worried about how the baby would handle the car ride than Diego. Our concerns were whether or not he was car-sick because he has thrown up in the car before on shorter trips around town. Our fears were realized when he threw up a few times on the drive over and we could tell he just didn't feel well while he was awake. I decided if we left early enough (4:00 AM), the kids would sleep a few hours and then we could stop for breakfast before heading out on the road again. Well, Diego decided he would not sleep since the portable DVD monitor was right in front of him and the baby slept for about two hours before waking up and starting to complain about riding in the car. We assumed if he drank his milk in the restaurant and then had time to settle his stomach he would be fine watching a movie like his big brother Diego. About an hour after we started driving again I had to pull over into a rest area to help my wife clean up the vomit in the backseat. After about 11 hours of traveling, 4 stops, and 2 big tantrums from Diego we arrived at my parents house and everyone was definitely ready to get out of the car !
My mom had bought a kiddie pool for my boys and Diego immediately set about helping me get the pool ready by spraying the garden hose everywhere. He loves playing with water, and especially the hose. Once that was ready he got right in and played for a long time. It was just what he needed to relax him from the long trip. Adrian also walked around the outside and got splashed by Diego. He would get to swim the following day with his big brother. During the trip we took the boys to the zoo and also an animal safari where the animals walk up to the car and you can feed them with supplies handed out by the safari employees. Diego loved the animals and did not seem to be afraid since we were inside the car. He had fun visiting his grandparents and so did Adrian, who also got to meet his aunt and uncle from California for the first time. My sister lives out there and had yet to meet our new baby, so we decided to make the trip over to Ohio because she would be in town for a wedding that weekend. Her and her husband had a great time with the kids and Diego got to take a big road trip as well. We feel trips like this will help Diego experience new things and help him to socialize...

Happy 1st Birthday Adrian!

Happy Birthday to my younger son, Adrian !!
Today he turns one and will get cake to celebrate. Diego has been forced to adjust with the new addition to the family but has slowly started to interact with his baby brother. He likes when the baby chases him by either crawling or walking (he's still learning to walk). Plus, since it is the baby's birthday Diego will get to have one of his favorites, cake!
We're relieved that Diego is feeling better, he went back to school after only missing two days this week with what seems to have been a stomach virus.
We love you Adrian!

Another doctor visit-we're staying positive

Diego woke up Tuesday 5/04 and he was not feeling well. With a slight fever and 'stomach issues'we were concerned because he has been battling health problems on and off for the last 4-5 months. Since he was unable to hold food down all day we went last night to his pediatrician. These visits are always stressful since he does not like to be examined and cries when the doctor or nurses enter the room. We had to restrain him to have his ears and throat examined and were given an antibiotic for a throat infection. My wife and I are on edge because of Diego's recent health issues. We've gone twice so far this year to have tubes put in his ears. The first set did not help as he quickly got another double-ear infection that caused fluid to leak out of his ears. After 4-5 trips to the ENT we decided (along with the specialist, who thankfully displayed enormous patience as he was forced to drain fluid from a patient who thrashed in Dad's arms) to replace the tubes in order for the problem to subside. So its easy to see why, less than a month later, we are worried to find Diego has a fever. His fevers get really high with the ear infections and my wife took him to the emergency room earlier this year when the fever would not go below 104...
Fevers are scary, but I'm thinking this time he'll be ok soon enough.

We go to the park and Diego runs

This past weekend we had such nice weather and I was able to spend most of my time outside. Sunday we went with both kids to the park and decided to drive out to a pretty large place to let Diego have more room to play and explore. He certainly took advantage. I had to chase him around the park until finally managing to 're-direct' him over to the playground where his mom and little brother were trying out the swings. Adrian (who will turn a year old this week) was in a swing but did not seem to pleased with all the movement. We did manage to get a few good pictures of him and Diego playing. Diego tends to get over-stimulated when he goes to the park and can't seem prevent getting lost in the moment. He runs around the whole place in a dizzying display of energy and yesterday was no exception. Part of this was our fault for going to such a big park with so many kids but we try to expose him to all the same activities in an effort to boost his social and play skills. The problem is usually the swings, and even though he likes them and I push him for awhile he eventually almost gets himself injured by other kids. This is what happened again yesterday. While running around the park he ran behind the kids swinging and made a quick turn to his right and another father had to catch his son before he flew back and knocked Diego down. The look I got from the other guy was not very nice but I didn't have time to explain as Diego got down (I grabbed Diego as well to protect him) and ran off in the other direction. I felt bad because I don't want to be seen as a bad parent with an out of control little boy but I know people sometimes look at me or my wife that way. It can sometimes take the fun out of the event when you feel helpless to control your son. He also decided to chase a remote control car around the playground while some other kid stood there and drove it around. The other boy eventually left and I had to stop Diego from chasing him and the little car out of the playground and around the park.
For all of his outbursts, Diego still had fun and even though things like this are stressful I like to think he learns with each social interaction. The trip ended with a scoop of ice cream for Diego to help cool him down and a relaxing ride home for Mom and Dad.

Life with D, what an adventure

Here it goes...
My wife and I are proud parents of two beautiful boys. My older son, Diego, just turned 4 in March and our second son, Adrian, will be one year old in May. I started this blog because I would like to reach out to others who are in a similar situation as us and because I would like to be able to use this as an update for those who are inclined to follow.
Diego is on the autistic spectrum. He was specifically diagnosed with Pervasive Developmental Disorder (PDD-NOS). Life with him has been adventerous since he was born in March of 2006. To be honest I did not know much about autism when we received the diagnosis and remember feeling surprised more than anything else. I saw him as a boy who just required more attention than other kids and figured his speech delay was something that was temporary. I remember thinking, "he'll talk when he's ready" and "the tantrums and crying will subside as he gets older". Well that was not the case.
We quickly realized that he needed help and started speech, ABA, and occupational therapy in the home through the Early Intervention Program. We live in one of NYC's 5 boroughs and the appointments, interviews, and "observations" started immediately. The program was great. We noticed how good his memory was and how quickly he would learn when he would work with his therapists. The only problem was a lot of the time he resisted the therapists and all of their efforts to establish a connection with him. When he says "no", it is by far the most aggressive stance I have ever seen in another individual. We weren't really sure how to proceed even though we knew how nice it was to be able to have our son in this program. He really fought the hardest with his speech therapists. That was tough to see and be a part of because we knew how important it was for him to receive that particular therapy. We decided to try a different therapist but then could not find anyone to fit our schedule (at this time both my wife and I were working full time). Diego introduced a whole new level of resistance on his second speech therapist and our frustration mounted. We made it through sessions but with a lot of crying and tantrums. As I said before, the Early Intervention program is great, we just did not have a lot of success with speech therapy. After only a few months of Early Intervention, we made sure to have all of our meetings and paperwork ready for him to attend preschool. That process included meetings with a representative from the school board and updated evaluations of Diego from his therapists. Spots in these schools fill up fast and after touring a few options we decided on a school and program that we really were excited about. However, we were extremely nervous and stressed in the months leading up to the start of the school year. The preschool we chose is for 3-5 year olds and is Monday through Friday from 8:30 am to 1:30 pm
We weren't ready to let him start but at the same time everyone was telling us how important it is to expose him to other children so he could become more social, and how the routine of school is beneficial to children on the spectrum. That was easy for someone to say but not as easy for us to follow through with...
In future posts I will discuss his transition to school and more information on his early years as well... see you soon...