My Super Hero

To give you a little more insight about my passion as a wedding photographer.  It comes from the inspiration my son gives me.  People often hear me talk a lot about my son and so I’d like to introduce him to you.  If you’ve read my “About me” page on my web site, you’ve seen this adorable little boy with a very contagious smile.  His name is Dylan and at the time I am writing this, he’ll be 10 in December 2011.  He loves SpongeBob Squarepants, Bugs Bunny and Daffy Duck (The Looney Tunes Show on Cartoon Network is his new favorite!), he’s learning to swim (I call him Aqualad because he loves the water so much),

 

  

He likes construction vehicles (bull dozers, dump trucks, anything made by Caterpillar)  and trains (Thomas and Friends are his favorites and he has them all and can tell you the names of each and every one).  He plays on his laptop and challenges me on the Nintendo Wii (yes, he’s played all the levels on New Super Mario Bros).  He loves music and he loves to sing!  He records his favorite shows on the DVR and watches them over, and over, and over……  He can multitask like you wouldn’t believe, playing on a laptop, watching TV and playing on his iPod Touch (which he calls his iPhone since I have one).

Oh yeah, he also has Autism.  Often, when I tell people about his autism, they tend to forget that he is still a little boy and likes to do some of the same things that other boys like to do.

To understand what Autism is you can go here (What is Autism?).  I was somewhat familiar with autism because I used to teach children at my church and two of the boys there were on the spectrum.  Both were non verbal, but one was a higher on the spectrum than the other.  Like most people, I saw, but I didn’t see.  I tried to understand what the mothers were going through, but I couldn’t.  Well, I do now.  When Dylan was first diagnosed, I remember my frustration, “Why my son?” was the first question naturally, but then after I threw myself the pity party that no one attended, I started looking into what I could do to give my son “a better life”, only to discover that he gave me one.  He makes me laugh and until I think about it, I sometimes forget about his autism, which is how it should be.

He has some of the same traits as other kids with autism and it takes patience and understanding to know what to do for him.  He started talking late, but he does talk so that makes communication a little easier, but, when something hurts him or upsets him, he shuts down – verbally and emotionally and you won’t get a word out of him until he is ready (that’s where the patience part comes in).  Sometimes, the best thing for him (and me) is to let him sit in my lap and just rock him until he relaxes (and he will sit in my laptop as long as he wants).  He likes order and routine so if he is used to something being in a certain place, it doesn’t move!

I got help from people that probably don’t realize they helped me.  One day while driving and channel surfing on the radio, I heard Holly Robinson Peete and her husband Rodney Peete, talk about their son and I heard Rodney talk about how he felt and I said, “finally! someone understands!  Rodney Peete wrote a great book for the dads that deal with this because often we tend to focus on how the mother feels while dad suffers in silence.  Considering that Autism affects more boys than girls, dads actually “suffer” more because we have these visions and dreams for our sons and when we hear the words your son has autism”, it shatters our world.  You can get info on Rodney Peete’s book here – Not My Boy!

I volunteer often with Autism Speaks and take pictures for them (which is the least I can do considering all the great work they do for children like Dylan).  When I attend the Walk events in Houston, Austin, and Dallas Ft. Worth and I see these children laugh, play and have fun I can’t help but smile and to see the parents and family and friends join together an walk for these kids brings even more pleasure

Along with his autism, he also suffers from dysphagia, which is a difficulty in swallowing and he has a texture aversion which means that he doesn’t like the feel or appearance of certain foods, so you can imagine what feeding time was like.  Until he was 7 years old, almost all of his meals were in “smoothie” form because of the eating issues (think about that the next time your think your child is a picky eater – at least your child can eat.)

He found help through an awesome nurse from Texas Children’s Hospital named Tiffany and she was able to do some amazing things with him and because of his trust in me and our close relationship, I was able to continue the therapy at home and he made progress.  We met Tiffany weekly at Therapy Connections PC in Bellaire, Texas (another great local place in the Houston Metro area for speech and ABA therapy.  Tiffany could only take him so far because of his age and if he had gotten to her sooner, she could have helped more, so if you have a child with feeding issues, PLEASE get them help as soon as possible!  In order for Dylan to progress further, he had to be admitted into a feeding program and to date, there are only two hospitals in the entire Country that offer it (which is kind of crazy if you ask me, but I digress).  One is in Richmond, Virginia and the other is in Dallas, Texas.  Given that the Texas Medical Center in Houston is one of the best in the Country, you would think there would be one here, but no (I plan on doing what I can to change that).  Getting him admitted was a royal pain in the you know what because of all the insurance red tape and don’t even get me started on that considering ALL the money I pay for insurance coverage!  He was finally able to be admitted to Our Children’s House at Baylor in Dallas for their feeding program.  They were able to pick up where Tiffany left off and he was able to eat from a spoon!  With daily work, he’s gotten further along and can feed himself with some foods, although he still needs help with others, but from where he was to where he is now is great progress.

This was the first meal he was able to eat without it being mashed or blended!

Often, as a parent, you’re asked to make sacrifices and often as a parent of a child with special needs, you are asked to make more.  If you’re in a similar situation with a special needs child, allow me to encourage you.  Yes, the road is hard, yes you get frustrated, you get tired, you feel alone, like no one understands.  But when you look in your child’s eyes and see their love for you, it makes it all worth it.  Don’t think you’re fighting alone because you’re not. There is someone that has been where you are going and can offer assistance if you reach out.  My shooting calendar for the year is limited because he is the priority and those parents of children with autism also know that often, social time is limited.  I like to look at it this way – some people think I’m missing out on the world by spending so much time with him, but I wouldn’t miss spending time with him for the world!

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  • grangran

    i am so very, very proud of the things you and dylan has accomplished,i am a little teary because of all the hard work you have done you are such a great fatherReplyCancel

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