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I’m not running to win, I’m running to honor

October 25, 2011 10 comments

Team Up! with Autism Speaks is dedicated to raising funds to support the mission of Autism Speaks through endurance events that we partner with.  Our goal with each race is to raise awareness and funds through races. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Please join our team and help us accomplish our mission!

Billy Mann, father, husband, Autism Speaks Board Member, believer…I am 42 years old, not graceful and not pretty, I’m training hard and a week away from the New York Marathon.  Between online donations, mail-ins and my awesome friends, P!nk and Carey Hart for contributing $25,000 towards the $110,000, we are only about $33,000 away from reaching our goal of honoring the ONE in 110 children. 

TEN REASONS why I’m running the marathon for Autism Speaks

  • I’m running to honor the incredible autism moms out there like my wife for whom every day is a marathon that tests their limits and then some.
  • I’m running to acknowledge children at all ages who, like ours, spend months/years learning how to simply hold a fork, or speak a word or learn to put on their clothes by themselves.  The 5 hours or so it is likely going to take me to complete the 26.2 miles is nothing next to the 40 hours of therapy my son needs every week just to fight for bare basic skills. If these kids can do that, I can push myself to the limits to do this.
  • I’m running for the parents but also to acknowledge the siblings and grandparents—in or out of any organization–that came before my wife and I, to thank them for being on the front line of advocacy before there was an Autism Speaks, before there were any services and they were brave enough to find a way forward.
  • I’m running for parents whose children with autism are now becoming adults with autism. Between now (when my oldest son is 9 years old) and when my family faces this transition, today’s parents who are addressing this will have done so much to benefit families like mine and I want to honor them now, and always.
  • I’m running to honor the high-functioning autism community and say thank you for educating us and ensuring that the world remembers that every individual with autism—however they are uniquely affected– has a voice, an intellect, gifts and talents, a point of view as valuable as any citizen and each individual contribution to our world should be respected, protected, embraced and celebrated.  I am running to say thank you to them, too.
  • I’m running because the human body is not meant to run 26.2 miles but autism makes us go beyond our limits.  I’m running because it’s hard, because it takes me out of my comfort zone, because I feel awkward doing it, because it hurts, because it takes leisure time and sleep from me: all things that our families face every day and it is a small gesture by comparison.
  • I’m running to acknowledge parents and families many of you know but do not realize that right now, silently, they are at the end of their rope and feel that they can’t go on another day struggling with autism’s impact on their lives because they are just strapped emotionally, financially, physically and even spiritually.  These are the parents who will keep my legs moving when I feel I cannot go on any more because they find a way.
  • In the past 7 years since we received our son’s diagnosed, autism prevalence soared from 1 in 166, to 1 in 150, to 1 in 110 (and 1 in 70 boys) in the USA.  It is 1 in 56 in the UK.  It is 1 in 38 in S. Korea.  Every time I share the statistics with people they always ask the same question, “Why?” and all I can say is the truth: we still don’t really know. With the numbers rising much faster than anyone could have imagined, we are lost without raising money. I am running so that when I ask you to give, you know I’m in it with you every step of the way.
  • I’m running to honor Autism Speaks, every local chapter, every advocate, every parent or sibling who wears a pin or has a puzzle piece on their car or baseball hat.  I am running to say thank you for being a safe resource for families like mine.
  • Lastly, I am running for Christian Hildebrand, an extraordinary little guy who God placed in the right hands with the entire Wright family and in so doing inspired real change in the world for all of us affected by autism.

I don’t know if we can reach the $110,000 for the 1 in 110 kids, but the marathon isn’t for another two weeks.  I’m not running to win, I’m running to honor.

In Their Own Words – Dear Future

December 16, 2010 30 comments

This “In Their Own Words” is by Stuart Duncan. His son Cameron has autism and was diagnosed at two and a half. Stuart lives in Toronto, Canada. Check out his Facebook and Twitter.

Dear Future,

I have to be honest, I don’t know you very well.  I don’t know if I can count on you or how reliable you’ll be. I’d like to think that you have only good intentions and that you’ll only get better, but I’m not naive. I know that you’re just as uncertain as I am and quite frankly, that scares me.

You see, my child has autism and as such, the past has presented me with a lot of fears as well as challenges that I’ve had to learn to overcome. I’ve also had to learn how to teach my child to overcome them. The past tends to remind me of those that turned their backs on us, had nothing left to help us with, gave us a lot more questions than answers and basically dropped a bomb on us before leaving us to the cold. To put it mildly, the past has not been too kind to my family. I’d much rather forget the past and move on, which is where you come in.

Dear future, I’m coming to you with an open mind. I know you’re not perfect and that there is already a lot of demand being placed on you. But I have to make you understand that I have a lot riding on you as well. I need you to be kind and compassionate. More so, I need you to have a lot of understanding and to be very accepting.

You see, I don’t know how much longer I’ll be around to take care of my child. And my child needs me so very much. Autism has made my child and I feel very alone in this world. We are looking to you to pick up where I will eventually leave off. I will be depending on you to be there for my child when I no longer can be and I’ll be depending on you to be bright and loving.

I am doing the best that I can now to prepare my child for you, but that’s a daunting task for the best of us. Since my child has autism, it’s just so very much harder. My child needs more guidance, more support, more understanding and more acceptance. The present provides some of these things and it has been helpful. But if I wasn’t here, it wouldn’t be enough.

The present is very nice and friendly but to be honest, I feel like I’m in a dentist’s waiting room and the present is the receptionist. I’m asked a lot of questions to which I answer, but have no idea what any of it means. I’m made to feel welcome with some magazine articles to read and the present even makes some small talk that resembles information sharing. But again, gives me no real answers.

For what seems like forever, I sit and stare at the present while they are constantly writing things down, filing things and taking phone calls from everyone and no one, while I sit there trying to keep my child calm. We’re waiting for you… the future.

Dear future, I’m going to need for you to be prepared. I need for you to do more than just wait until I get to you. The past gave me an awful lot of questions for which the present had no answers to. I will be needing you to provide those answers.

I can’t imagine what life will be like for my child if you don’t have those answers. Answers such as where my child will live, and with whom. Will my child job have a job waiting? Will there be better medications and treatments available that offer more consistent results? Will there be love waiting for my child with the possibilities of a family as well?

I have no one else. You’re it. I’m sending you my child whether you like it or not… for better or worse. Dear future, if you’re not ready for that, please do whatever it is you have to do to be ready. My name will be called soon and my child will be needing you. So I’m needing you right now. Please be ready.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Telling It Like It Is

August 12, 2010 9 comments

This “In Their Own Words” post is written by Jake Davis of Omaha, Neb. He is a single father of three children, one who has autism.

I’m a 31-year-old divorced father of three children, who I have full custody of: my boy Ian (9) and his sisters Sienna (8) and Ashlyn (6). I’ve had them on my own since 2005. Yes, it was trying in the beginning, but new soon becomes normal and normal becomes manageable.

My son, Ian, is an Aspie (has Asperger Syndrome) and he also has elements of Semantic-Pragmatic Disorder. Most people reading this will have a fair idea of what this entails, and for those of you who don’t, I’ll put it in a nutshell. Ian has an amazing imagination, almost superhuman technical recall, and he’s very blunt and matter-of-fact in his conversations. His imagination leads him to very interesting solutions or observations from time to time.

I love the way Ian’s thought process works. No boundaries, no form, no restrictions. Just a little boy’s logic, voiced the moment he thinks it.

The way he works is normal to me. I forget that it can sometimes be jarring or unusual to others. I try to work with him and explain the ins and outs of social interactions and the right time and place for things. He uses his experiences to dictate how he should respond in a situation he’s encountered before, sometimes it works, and sometimes it doesn’t. Then, there are those rare moments when you get to watch the results of an unexpected situation.

Earlier in 2007 we had moved to the western end of Nebraska from Omaha which had interrupted the every other weekend visitations with their Mom. During the summer we still kept the six week visitation schedule in place, and it was July, so they were out of school and it was time for the kids to go on their vacation.

They knew Mom was coming, and so we packed everything up and waited for her to show up the next day.

Their Mom arrived and we loaded car seats, snacks, their bags and toys for a summer adventure. I hugged and kissed the kids goodbye and as they pulled away, I decided that I had earned a nice long afternoon nap, and I went up stairs, laid down, and fell fast asleep.

I was jarred awake, seemingly only seconds later, by the ring of my cell phone. It was my ex wife.

I didn’t get out more than a groggy “Hello?” before I was hit with “Jake, I’m going to jail!” In my newly awake stupor, I wasn’t connecting all the dots. More explanation was rattled off as my brain was trying to interpret these words with varying degrees of success.

She had been pulled over for drifting onto the shoulder in front of a State Patrolman. I was still failing to understand how driving on the shoulder equals jail.

The unfortunate and embarrassing part is that my ex was behind on her child support payments. It wasn’t (and isn’t) much money at $150 a month. I don’t really need it, and when I did get it, I’d treat the kids to dinner and a movie, or a toy, or some new item of clothing they’d see while we were out shopping. She had some trouble keeping a job and a place to live. So I didn’t worry about the money (and they were going to their Grandma’s for the summer, so I wasn’t worried about lack of a permanent residence). The state however, did worry about it, and unbeknownst to me, had issued an arrest warrant for non-payment of child support. And they suspended her license.

After I had time to process the statement and the reason, I got dressed as fast as I could and drove the 40 miles away to where the Patrolman was waiting with the kids and their Mom. The Trooper had waited for me because he didn’t want to call child services and didn’t want to put their Mom into cuffs in view of the kids.

I arrived and quickly I loaded the kids stuff into my car (everything I had loaded into hers about an hour prior), and the kids hugged her goodbye and said they’d see her later.

On the way back to the car Ian says “Dad, we gotta bust her out!”

I stifle both a feeling of panic and laughter, responding with the tersest whisper I can manage, “Ian, be quiet! Get in the car!”

Undeterred by my attempt at handling the situation Ian pipes up even louder “Maybe we can bake her a cake with a file in it!” Again, fighting laughter, I whisper, “IAN! GET IN THE CAR NOW!” while quickly ushering him into the vehicle.

From what their Mom said, the Trooper had heard everything and thought it was pretty funny and had wondered aloud what cartoons Ian had been watching.

Fast forward three years later, their Mom got caught up on her child support, has regular work and is due to be married next summer. Ian still quite plainly tells it like it is, and I’ve been laughing the whole way.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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In Their Own Words – The Spectrum

July 13, 2010 4 comments

This “In Their Own Words” is written by Lou Tecpanecatl. Lou has a four-year-old son named Diego, who was diagnosed with PDD-NOS  in August of 2008.

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 four 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 four 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, he can find a way to contribute in a positive way that can enrich his life.  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 differently than most.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words – What a Difference a Day Makes

July 6, 2010 13 comments

This “In Their Own Words” essay was written by Matt Rizzo, of Creve Coeur, Mo., who has a son with autism.

I will never forget the day. While the details escape me, the day will live on. Was it sunny? Was it raining? Maybe it was overcast. All I remember is how I felt. I was insanely nervous. I was dreading the appointment. It was a day that we had been building up to for the better part of a year. My wife and I were going to a neurologist to see if our son, Gabe, had autism.

For about a year we had been noticing that Gabe was missing developmental milestones. He was always on the low end of “normal.” His ability to interact appropriately with other kids of his age was drastically deficient. He began repetitive behaviors such as running back and forth, crashing into walls, spinning in circles, etc. So I did what any self-respecting father would do. I got on WebMD. (Sidenote: don’t look at WebMD. You will always end up with terminal cancer.) The good doctor told me what I had been fearing. Gabe had autism. But this was just the web talking. There were other signs of “normalcy” that I chose to cling to. Maybe this was just a phase. Then came the moaning and the lack of speech. He had a 40-word vocabulary, but chose to not use it. Instead he would spend the day moaning. We knew something was not right. We finally made an appointment with a neurologist to see if we had a true case of autism or if we were just being paranoid.

I remember getting to the doctor’s office and sitting in the waiting room. Gabe was restless as usual and wanted to run back and forth, so we let him. I was trying to stay calm. After all, for the last six months I had been looking at WebMD and was aware of what autism was, but not what it really meant. I knew that the disorder entailed social difficulties; I knew that speech was sometimes difficult. I knew some of these people were insanely intelligent and incredibly talented, but I did not know what that looked like or felt like.

We were shuffled into the office and Gabe played with some toys. The doctor began asking my wife and I standard questions. We answered with as much detail as we could and explained why we thought one thing or another. In retrospect, we were probably shading the answers in such a way that would make Gabe appear more “normal” than he actually was. After about 20 minutes of answering questions, the neurologist observed Gabe playing for about five minutes. It seemed much longer than that as we simply sat back and watched as well. The doctor then stopped and asked if we had any questions for him. I remember thinking to myself “Yeah, man, what’s up with my kid?” Fortunately, I allowed my filter to kick in and instead asked “What are your thoughts?” His response, “Oh, it’s autism”.

Three words.

Three words I will never get out of my head until the day I die.

In that one moment my entire life changed. I was speechless. I have only found myself in that condition a few times in my life. I truly could not come up with words. I remember looking out the window wondering what all this meant. My wife began asking questions of the doctor and he promptly began surfing the web to print out resources for us. I felt like an airplane just landed on me. We left the doctor’s office with more questions than answers. These questions still keep me up at night. Will Gabe have friends? Will Gabe need assistance in living his adult life? Will Gabe be living with me and my wife ’til we die? Who will take care of him after we’re gone?

In the last year, those questions have been removed from the front of my mind, but they will always be there. Instead, we have learned to take each day one step at a time. There is so much we don’t know, so instead we focus on what we do know. We know that Gabe has made huge strides in the last year. Instead of moaning, Gabe tells us what he wants now. He is starting to mimic “normal” behavior. We know that Gabe is the hardest worker in the house. Gabe goes to school for eight hours a day, including therapy. He is not yet four years old. We know that Gabe has a big sister who doubles as a full-time therapist and gives more to her little brother than any six-year-old child should ever be asked to, and she does it with a smile. We know that we will always be Gabe’s voice when he does not have the ability to show the world his. Outside of this, we let each day happen and react to it as best we can.

April 14, 2009 was the darkest day of my entire life. But from that darkness came an understanding of who Gabe is. Until that time, I did not know how to build a relationship with my son. Having him diagnosed opened up a world to us that allowed us to shine light into the unlit corners of Gabe’s mind. Doing so has allowed me to finally connect with my son. He loves music. Every night, Gabe allows me to fulfill my childhood dreams of being a rock star when I play guitar for him while he takes a bath. He makes me proud every time he tackles me and punctuates it with a “Go Steelers!” He warms my wife’s heart when he is going to bed, hugs her, smiles and says “happy.” It was the worst day of my life, but my family was made better for it. My family has united around Gabe. We don’t kid ourselves and we don’t set expectations. We don’t ever think he will be “normal”, and honestly, I am not sure I would want Gabe to be anyone else other than who he is.  He is our “Buddy” and we like him just the way he is.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – The Silver Lining

June 20, 2010 24 comments

Did you ever do something completely outrageous, if only just to satisfy your special needs child? It’s like a moment when you surrender to autism, and you can’t decide if that is good thing, a bad thing, or just a fact-of-life-on the spectrum autism thing.

That was me this past weekend.

I was trying to put a positive finish on an up-and-down weekend. I had cringed as Trevor struggled to follow instructions at the hockey clinic he attends. I beamed when he came off the ice smiling, proudly telling me how sweaty he was from the hard work. I took it like a kick in the gut when I asked Trevor what his friend from special needs camp might like to do on a play date and the answer began with “Well, I like garages and he likes traffic lights …”

Trevor does like garages. He classifies all houses by their garage doors, and he describes the doors by naming their color/window scheme, starting from the bottom up. There’s “brown-brown-brown-brown” and “white-white-white-glass” and “white-white-glass-white” (because the windows aren’t always in the top row. Who knew?)

There’s even “ficky glass” – his word for windows that aren’t square but rather are some fancy shape. Oh, and “T glass,” or windows with four panes instead of one.

Apparently our garage door – “white-white-white-white” – is the lowest of the garage low-rent district.

A week ago, when we were talking about garage doors (in an attempt to distract Trevor from his anxiety over the brutal traffic coming back from the Jersey shore), I happened to mention that ours was actually “white-white-GLASS-white,” which has much more status in the garage world. The windows had been painted over by some previous owner.

Ever since that moment he’d been asking me if we could scrape the paint and transform our garage. It was not a project I was enthusiastic about, for a number of reasons. Nevertheless, on Sunday I finally ran out of excuses.

The clincher came when Trevor agreed to go with me to the store to get the supplies. He NEVER agrees to go to the store, even if it’s to get him something.

I relented. I was ON BOARD. So what if it was 90 degrees and 1000% humidity and I would be scraping paint inside the unventilated garage with the door closed? (Did I mention the windows were painted on BOTH SIDES?) Darn it if I wasn’t going to win Dad of the Year, or die (likely from paint-chip inhalation) trying.

A few minutes into the job I realized how futile it was. The paint was stubbornly clinging to the windows. I had to keep shooing Trevor away from helping for fear he’d inhale some of what I was trying to block with my 99 cent painter’s mask.

Finally, I got a single pane cleared – on the outside. Dripping in sweat and covered in paint flakes, I decided that I would do the inside of that one window and stop. Then I’d let Trevor come up with a new name for the resulting garage scheme.

I moved inside the garage to do the other side. I shut the garage door and started scraping away. I got it about half done when I pushed a little too hard and the glass shattered. My heart sunk. My anger spiked.

I was angry to be soaked in sweat, inhaling God knows what, scraping stupid paint off a stupid garage door window because if my son was “normal” I wouldn’t be there. I was angrier still that I wouldn’t be able to deliver for him. I threw down my scraper and threw open the garage door – conveniently forgetting that in doing so I was raising the glass shards directly over my head. The glass came crashing down on me. I felt my scalp. My hand was covered in sweat, and more than a little blood. Luckily it was just a nick.

I went inside. For about the tenth time since I had started, Trevor asked if I was all done, and his look just broke my heart. It was as if an affirmative answer would have made everything all right, if only for a moment. I think as special needs parents, we are always trying to deliver those moments. Every once in a while we can reorder the world to suit our kids.

I told Trevor the bad news. I feared a meltdown. He took it well, but was disappointed. I went back outside to tape some cardboard over the shattered window, and then finally allowed him to see my work.

He looked it over and pronounced the result “okay”. We now have a “white-white-SHADY GLASS-white” garage. In the words of the Jeffersons, we’re “movin’ on up.”

I told this story to several co-workers Monday. They got it but they don’t GET it. And that’s okay, too. Maybe the next time they see a child with an “odd” interest or one melting down in public, they’ll think twice about their reaction. Maybe they’ll start noticing exactly how many different types of garage doors there are, too.

The silver linings are out there, they’re just sometimes, really, really, REALLY hard to see.

This “In Their Own Words” essay is written by Russ Levine, a father of two children, one who has autism.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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