Tag Archives: autismo

Getting High For Autism…is that the answer?

Recently I read an article where parents in Oregon were giving their 11-year-old child with autism medicinal marijuana to “help” with his behaviors and symptoms.

I had to read the article a few times to really digest it and consider it from different angles.

My first inclination was outrage…really?  Parents are now doping up their kid to get him to calm down?  There’s nothing else to do?

After reading it again it just made me sad.  I’m sad for this 11-year-old boy who is afflicted with autism and seizures.  I’m sad for these parents who have had to put their precious child in a state institution…at age EIGHT?

My son is seven years old.  I can’t even imagine–on his worst day–how it would feel to deposit him in an institution because he was too hard to handle.

I don’t condone giving children medical marijuana…but that’s just the superficial  element to this story.  It’s not really about doping up this kid, it’s that there doesn’t seem to be anything out there to help him in his situation.

For that I am extremely sad.

We must do more.  Doping up kids is not the answer.  Maybe it will chill them out for a while, but it’s not going to solve anything or certainly cure or “treat” any of the symptoms.

We live in a society where we want immediate gratification.  If I want something, I’ll buy it.  If I don’t have the cash, put it on credit and pay it off later (or never).  We are in an Internet Generation of immediate results, answers and solutions.

We can’t treat our children on the spectrum like a Website.  We can’t expect to get the quick fix when it comes to autism.

My heart breaks for these parents–I don’t even know them–but I can imagine how their hopes and dreams and hearts have been smashed to pieces time after time after time.

Autism SUCKS!

We have to demand more from local, state, federal resources.  We have to demand more from the private sector.  We have to demand more from churches and non-profit organizations.  We have to demand more from our public and private schools.

If the studies are true and 1 in 47 boys are now afflicted…how much medical marijuana and how many state institutions are going to be needed in 5, 10, 15 years?

This can’t be the solution.  Doping kids and casting them aside isn’t the final answer…I just can’t believe that is going to be the best solution.

We have to demand more from ourselves…no one outside the Autism Community gives a rats-ass about our plight.  No one is going to just start handing out money to help find realistic treatments and maybe even a “cure”…if it’s not going to be you then who will it be!

No…none of us asked for this.  Our children didn’t ask for this either.  But for some reason we’ve been given the duty/chore/task/blessing of having a child on the spectrum and together we can only make changes.

What are you prepared to do?  Take the easy way out or do something about it?

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com

Making Sense of Scratching, Clawing and Biting

It’s December 27th…probably the worst possible day to write a blog and expect that someone will read it…much less respond to it.  But who cares…I have time to write and I just had a good conversation with a buddy of mine who is also a daddy with a son with autism and so it motivated me to write a blog.  So…to the tens of people out there today on December 27th who are blogging or searching…this is for you!

My friend and I talked about how at times our sons (his 5 and mine 7-years-old) can have immediate fits where they scratch and bite and claw and do all that fun stuff that comes with autism.

I don’t know why his does it, but I think my wife and I have somewhat made sense of William’s fits…and it all is about communication.  UGH!

Lately we’ve noticed that he’ll claw/bite/scratch/pinch whatever when he just can’t communicate his needs and wants.  Yeah, yeah, yeah this sounds pretty simple but as he gets older, it’s more and more complex.

William recently reverted back to scratching/clawing/biting not just when he doesn’t get his way, but when he can’t express what he wants and he is embarrassed.

Yep…he’s embarrassed that he can’t explain what he wants.

Wow…it hit me like a ton of bricks when we finally realized this.  It wasn’t that he didn’t get a toy or treat, it’s when he knows that he did something that he shouldn’t have done or that he did something that brings him negative attention.

The mind of the autistic child is so fascinating.  I wish I could just plug into my son’s brain and see how he sees–someone will develop that and will become a Gillionaire!

Yes he still gets upset when he gets in trouble or doesn’t get his way, but the older my son gets the more i see that his frustration is not only in his lack of communication, but that he understands that he’s not “typical” and that he sees how at times it brings him attention that isn’t the right kind of attention.

Anyone else have similar experiences? Thoughts?  Words of advice or in addition to?

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com

The Church and Autism

This is blog post #2 in my series: “The _______ and Autism”

First was “The Government and Autism” and I have thoughts of writing about Public Schools, Insurance Companies, the Private Sector…if you have any ideas or topics you want me to spew about…just let me know.  Always looking for good topics where I can pretend I’m an “expert.” 🙂

Remember…my thoughts, my opinions, my blog…goal is to share, provoke, start discussion…enjoy.

The church my family attends is literally a God-send.  For those of you who don’t attend a church or don’t have a church family…get one.  Of course variety of reasons but when it comes to having a special needs child, you need a group that will support you…and for us, our church is such a group.

I’ve heard horror stories of people being asked to leave a church service or the church entirely because they have a child on the spectrum…and that makes me sick.

For us, informing our church about our son, who has autism, was such a blessing and relief.  It wasn’t always like that.  We tried to “hide” our son thinking it was a learning delay or just the way 2-year-old children act…but when we finally let people know, many people came and walked alongside us and supported us and for that we are eternally grateful.

As a whole…from what I’ve seen/experienced/heard…the church is failing the autism community.

Hard pill to swallow isn’t it?  Again…the church is FAILING the autism community.

Now I know there are programs and churches out there that have a “Special Needs Ministry”…not sure how I feel about that…why does a group that is already stigmatized need to be further stigmatized and segregated from typical members in the church?  But I do applaud those churches out there that at least attempt to meet those special needs members where they are.

I realized my frustration when we started promoting our book, “Look At My Eyes.”  My wife and I are open and vocal about our faith in Christ and how our faith and dependence on Him through the early stages of learning about our son’s diagnosis allowed us to deal with it as best we could.  We discuss what our relationship with Christ means to us in our lives, our marriage and our raising our children…and it’s all in the book.

I was surprised to receive such a “mehhh” response from churches across the DFW-Metroplex when we approached them about having us visit and speak and sell books.  I researched all the large churches and wrote them letters (not emails!) and sent them books.

Our goal has never been to make money off the book.  We’re so in the hole it’s not even funny–and that’s okay because we wrote the book to bless others going through similar situations.  We wrote the book to help as many people as possible…not make a buck.

So here we are…giving churches our book, telling them we’d love to come and speak FOR FREE, to help minister as much as possible to families, to help train Sunday School teachers, nursery workers, administrators, members…anyone in the church who might need or just want to know how to help the autism community in their congregation.

Do you know how many churches took us up on that?  Two.  I probably sent out 20 books.  Two.  And one of those was our church.  The other bought 4 books and  that was about it.

Bitter?  Heck yeah I’m bitter!  The autism community is not being served or paid attention by the church and that’s a shame.

When our son was younger and we’d visit a friend’s or family’s church we were horrified to take William to the nursery.  He didn’t have the ability to sit with us in the church service, but it was such an ordeal trying to explain to these nursery workers how to handle him if he has an episode or whatever.

Finally we just stopped going to churches where we didn’t know the nursery staff.

And that’s a shame.

The church needs to do a better job at educating their ministers, teachers, workers how to handle the simplest of situations.  The church needs to offer training and support to parents of families with special needs children.

The church needs to encourage “typical” members to engage with those other members who might be a bit different.

What if a young family moved to a new town and had a child on the spectrum and was looking for a church family to call home…so they start looking around and one Sunday they try one and when they drop off their child for Sunday School or Children’s Church they either have to explain how to handle their child or are so embarrassed they just get up and leave?

That’s not what the church is all about.  That’s not making all comers feel safe and secure.

Shame on you church for not doing everything possible to make people feel at home.  Shame on you church for not taking the time to teach your child workers the basics of how to relate and handle a child with autism.  Shame on you church for not taking advantage of free resources to teach your congregation how to love and cherish those on the spectrum.

Melanie and I don’t have all the answers.  We are definitely not experts on all things autism.  BUT I think we have something to say and I think it could help those dealing with life with a child on the spectrum.

We’d love to share our story, our book, our ideas and mostly our faith with your church.  Together we can discuss how to make the church a safe and attractive place for families thirsty to hear the good new of Jesus Christ and to know their autistic child will be loved.

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book inSPANISH as well…buy it now!

The Autism Dog

His name is Charley Bear…

Yep…he’s a dog and he’s great!  In February we got a miniature Golden-Doodle dog and he’s great.  Yeah he barks (sorry neighbors…well not all of you–he’s a puppy, deal with it!) and he still bites and jumps a bit too much…but he’ll continue to learn and he’s great!

My wife and I were hesitant to bring a dog into our special needs family.  Our son, William (6) has autism and our daughter, Margaret (4) didn’t much care for dogs prior to getting Charley Bear.

I had dogs around me growing up–but never the “Boy and his dog” type scenario…they were just there.  My wife had cats (ick) as a child.  So neither of us were really gung-ho at first.  But now we are.

Charley Bear loves to please.  He loves William and Margaret and loves to play with them.  He allows the ear pulling, the squeezing, the grabbing and tugging…he’ll snap at the kids still–but for the most part, he’s just what our family needs.

They’re not cheap dogs and Charley Bear has already cost me a bit in medical issues–ear infection, allergies, toys and stuff…but to me it’s worth it.

I can’t wait to see how the kids and Charley Bear grow up together.  He is their dog (although I like to play with him just as much) and I’m excited to see how they all mature and grow together.

If you have a special needs child…consider getting a dog.  Make sure you get a dog that is willing to be harassed because that’s just what is going to happen.

You’ll be glad you did.  Anyone else have stories about their pets with special needs children?

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!

Does Autism Hurt?

It’s almost as if my son doesn’t feel pain.  He doesn’t cry much if he falls down or the dog bites him or he skins his elbow.

Last year we were at a function for his school and there were bounce houses and all that fun stuff.  William L-O-V-E-S bounce houses and so he was off and jumping when he saw those.  A few hours later one of his therapists asked if he had hurt his foot.

“Why?” We asked…

Well apparently he was limping around.  So we got closer to him and he HAD A SAFETY PIN STUCK IN THE BOTTOM OF HIS FOOT!

Uhh yeah, that’s right…a safety pin!  He was just going along, not crying, still bouncing…YIKES!

William also loves the monkey bars.  He is amazing at them…it’s so cool to see how he’s progressed…first I had to hold him, then he would only do a few bars, now he goes back-and-forth, back-and-forth.

Last night I noticed he was looking at his hand…I went to him, asked if he were in pain and he said “Yes” and I looked at his hand.  It had two huge  blisters and was pretty raw…he didn’t cry, didn’t tell us and more importantly–he was continuing on the monkey bars.

So it got me thinking…does having autism hurt?  I know there are sensory issues with children so that pain doesn’t register with them like a “typical” child…but it’s pretty amazing.

It got me thinking about what other Super Human feats of strength those on the spectrum might have that us mere mortals don’t.  I know he can jump on the mini-trampoline longer than any other 6-year-old in the history of the world!

We have friends whose children will cry at the drop of a hat…William will fall down, say “uh-oh…it’s a boo-boo” and then keep on going.

Does anyone else have this experience?

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!

Genetic Testing for Autism…what do you think?

Recently an individual sent me a Facebook message about my opinion regarding genetic testing and autism in expecting mothers.

Wow…is that a hot topic or what?  Let’s discuss…

First of all, my opinions are my own.  They are not to judge you and your opinions and they are not to say they are the ONLY or RIGHT opinions.  They are the RIGHT opinions for me and my family and my child who has autism.

If I could go back 6-years ago before William was born and have him tested for autism…would my wife and I have done that?

NO WAY.

We had the opportunity to have him tested for other disabilities–that seems pretty common these days–and we elected to skip those tests as well.

I can’t imagine my life without my son.  Sure it’s not the way I imagined it before he was born, sure there have been many frustrations and expectations that have had to change…but there’s not a minute that I would change (well okay, maybe a few minutes when he used to poop and spread it all over the place…can I erase those memories from my mind?)

To have someone say, “your child is going to be born with autism” would be amazingly sad and depressing.  Now some people might say, “well if you are told beforehand about the condition of your child then you will have time to digest it and cope with it.”

To that I say…”that’s a bunch of BULL CORN if you ask me”

Why do people want genetic testing for unborn babies to know if they’re going to be “different”…let’s be honest here people, they want to do it so they can then decide to keep the child or not.  Plain and simple.

William is a precious child of God.  He is a gift to my wife and me and an integral part of our family structure.  He has autism.  He has language delays, he has fine motor skill delays, he seems fairly smart but I’m sure he has some cognitive delays as well.  I don’t know if he’ll live on his own, hold down a job, go to a four-year college or university, go on a date, kiss a girl, have children, dance with his daughter on her wedding day…give the eulogy at my funeral.  I do not know.

I know his testing, therapy, medicines, treatments, research, schooling…has cost us a lot of money.  I know that I would rather have spent that on “fun stuff” like trips or goodies…or just as savings to build up our nest egg.

But I also know IT’S NOT ABOUT ME.  IT’S NOT ABOUT MY SELFISH AMBITIONS, WANTS, DESIRES.

It’s about loving this precious child that we have been blessed with.  It’s about honoring God and serving him to the best of our abilities.  It’s about using our God-given abilities and talents and combining them with our passion to help our son and to help our community understand more and more about autism and other Pervasive Developmental Disorders.

I know, I know, I know…those in favor of this will say, “it helps diagnose a child on the spectrum so early…”

And yes it might…and then what?  Until the age of 3 what can you really do for a child on the spectrum?  I’m sure there’s something but from what I’ve seen/heard/learned/been told…age 3 is really when they can get a proper diagnosis and the child is “capable” of benefiting from scientifically-based and scientifically-proven therapies such as Applied Behavioral Analysis.

Still…it comes down to this…WHAT’S THE POINT?

Is the point of life about you and your happiness?  Is the point about using your gifts, talents, strengths and abilities to make the world a better place?  Is the point about putting your selfish desires and ambitions aside to serve those who can’t help themselves?

Remember…your child didn’t ask to have autism.

I can pretty much guarantee you that 100% of those on the spectrum would ask NOT to have it again if they could make that decision.

But to not be born at all?

Maybe I’m wrong here.  Please tell me that I am.  Maybe these genetic tests are really going to be used as a positive test and tool to come up with a “cure” for autism or to  help diagnose children….but I just can’t believe that.

We have seen too many “good” things in this world be used for evil even if that’s not the intended purpose.

Where will it end?  Already 90% of children that have been tested in the womb to have Downs Syndrome are aborted.  What would happen if all of a sudden the autism gene is detected?  When does it stop?  Not the right hair color?  Not going to be tall enough?  Smart enough?  Right handed?  Left handed?

You know it’s just a matter of time before those genetic tests are released to the public…and so what happens then?

You can believe in a higher power.  You can not believe in a higher power.  You have your thoughts on issues…fine.

But this is your child we’re talking about.  This isn’t life-or-death.  This isn’t danger to the mom or baby or whatever.  This is “ehhh…I’d rather not be inconvenienced with the idea of having a less than perfect child”

Tell me I’m wrong.  Tell me I’m crazy.  Tell me this isn’t what it’s all about.  Because if it is…I want no part of it.

Oh…and buy our book 🙂 and in Spanish too 🙂

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!

Rocks and Rice…Fathers and Sons and Autism

Rocks and Rice…huh?

What’s that got to do with autism?  Please explain.

Okay I will.

Last month I was visiting with a friend of mine who is also a father with a son with autism.  We’ve developed a good friendship over the past few years–my son is now 6-years-old and his son is a little younger–and we like to bounce ideas, stories and other things off one another.

I’ve mentioned it before and I’ll mention it again…FATHERS: YOU NEED TO HAVE SUPPORT WHEN DEALING WITH YOU AND YOUR CHILD ON THE SPECTRUM

I have a weekly group I meet with–but that’s not what I’m talking about.  I’m talking about getting to know another father who has a child on the spectrum.  You need to have a go-to person (not a spouse or family member) preferable another male that knows EXACTLY what you’re talking about.

It’s one thing to have a buddy listen to you and say, “gee, that sucks.”  BUT it’s another thing to have a buddy say “man, I know EXACTLY what you’re talking about…my kid did the exact same thing”

Trust me…do it, do it….DO IT

So my friend was telling me a story about his son (and it’s okay bc he said I could share)

His son loves to pick up rocks and put them in a kiddie pool in their back yard.  Over and over and over again this boy will pick ’em up…put ’em in…pick ’em up and put ’em in

I’m assuming that parents return rocks to yard when child isn’t paying attention.

My friend’s son is also big into texture and so they decided to fill their kiddie pool with a 100 lb bag of rice because his son loved the feel of the rice.

Like my friend…I love sports.  I love to throw the ball and Frisbee and be active.  I loved shooting hoops as a kid and do all that fun stuff.  My dad had two left feet.  Not only was he NOT into sports but he had these “coke bottle” glasses and so wasn’t comfortable with balls flying in the air.  I learned at an early age that if I were going to have someone tossing me the ball…it wasn’t going to be my dad.

Growing up I always thought about how much fun it would be to have “a catch” with my son.  You know…stay out until dusk tossing the football or baseball when it gets just dark enough that you’re not sure if you can see the ball–and then getting clunked in the head from time-to-time…fun stuff like that.

So to my friend.  Even though we understand that our sons might not be super athletes, we still think about tossing the ball or kicking the ball in the yard.  His son isn’t into it…and neither is mine.

And that’s okay…we’re not so hung up on ourselves that we can’t find joy in doing other things with our children.

But my friend was perturbed because he didn’t feel as if he was bonding with his son just by picking up rocks or sitting in a kiddie pool of rice.

OH CONTRAIRE MON FRERE…

He’s doing just what he’s supposed to be doing.  No, he’s not tossing the ball or shooting hoops…but he’s doing what he needs to be doing…and that’s spending time with his son.

At times fathers (and mothers I’m sure) feel they’re not doing anything constructive with their children on the spectrum.  I know I feel as if I’m not making a connection or bonding with my son fairly often.

But then I got to thinking about it…IT’S ALL ABOUT ROCKS AND RICE!

It might not seem like a big deal to us fathers…but to our children it MIGHT be a huge deal.  We’re spending time with our children.  It doesn’t have to be the most fun we’ve ever had–but get out there and spend time with your child…you are making a connection.

I started thinking about my relationship with my son…”what are my rocks and rice?”

Then I thought about bath time and the little games I play with my son.  He loved to tap, tap, tap (yes, drives me CRAZY!) on the water bucket when I’m pouring water in the tub.  I know he loves it, he knows it drives me nuts, we’re a very knowledgeable family.

So the little game we play is for me to try and swipe his hand away before he can tap on the water bucket.  Then it becomes fun because he tries to get faster and faster and maybe distract me.  All he wants to do it tap, tap, tap that water bucket.

We have other little things…yeah they might not seem important…BUT THEY ARE.

So fathers (and mothers) just remember…it’s not about what you’re doing with your child on the spectrum, it’s not about YOU and your needs…it’s about Rocks and Rice.

What are your Rocks and Rice?  Share them if you please…

Mirame los Ojos…Look at My Eyes…Autism in Spanish

Hopefully you are already aware of the book my wife and I wrote last year, Look At My Eyes.  IF not…then you need to check it out.  We penned the book to discuss not only our story of dealing with navigating the autism spectrum, but to share helpful in-home exercises, words of encouragement, ways to deal with insurance issues, good Websites and I wrote portions from a father’s perspective–because there is so little out there for dads when dealing with a child with autism.

The book has been out for about 15 months and we’ve had a blast telling and selling.  We have been blessed to have caught the attention of many in the media, conference organizers and parents who are desperate to have a good resource that is a quick read and is meant to bring a message of hope and encouragement.

At our first speaking engagement an elderly lady came up to me and told me about her grandson that she was taking care of and thanked me for writing the book and spending our own time and our own money to publish the book.  She did not speak English very well…she spoke Spanish.

While she could read our book and understand what we were saying at our talk, she was more confident in her native language.  That makes sense…we see that a lot these days.  You only have to turn on the local sports station to see athletes from all over the world playing in the United States doing interviews in their tongue they are most comfortable using.  Heck, there are players who have lived/played in the U.S.A. for years and you know they speak English very well but they just want to be more confident speaking their favored language.

Autism has no language.  Autism doesn’t affect English-speaking children more than Spanish-speaking children.  Autism doesn’t care where you are from, what kind of car you drive or whether you vote red or blue.

And so it hit me…we need to have our book translated into Spanish.

I immediately started thinking how I could make that possible.  The first printing cost us a good bit of money and I doubt we’ll ever “break even” (would be nice but that’s not our goal) and we didn’t have the funds for a second book like we did for the first one.

It was high on my prayer list.  I would pray that it would be possible because there is so little in the Latino community in terms of outreach and resources for families dealing with autism.

It was really cool how it all came about.

As it turns out…my brother-in-law’s brother (follow with me here) is a licensed translator and would be living in the U.S. for a few years…he and his wife spend a lot of time in Central America and we don’t see them that often.  But he would be living only 2 hours from us for a few years and would be willing to help translate the book for a very affordable price…step one.

Step two was finding a publisher that would allow us to keep the rights, not cost quite as much as our first publisher and yet would help us distribute the book and make it available online.

A family friend of ours also has been writing a book.  He used a publisher that met all that criteria.  They were a fraction of the original publisher, they didn’t take so much money up-front (that was huge bc we didn’t have the funds) and they arm of the largest Christian publishing house, Thomas Nelson Publishing, in the world…so they have a great reputation and know how to get things done.

I was so happy to learn about these two options!  When discussing marketing and outreach with our new publisher my answer was, “well, we didn’t spend any money on outside resources with Look At My Eyes and we have been able to generate a good amount of buzz.”

But that wasn’t going to be the case with Mirame los Ojos…not only do I have not have the time to do much for the first book anymore, I certainly don’t have the time or energy to promote the second book…it’s exhausting (oh and I also run the sales and marketing division of a new home building company so yeah, I’m pretty busy)

The icing on the cake with our publisher was that–since we didn’t come out of pocket as much as I had thought/planned for Mirame los Ojos we would be able to spend a few dollars utilizing their marketing and PR arm of their operations.

And thus…Mirame los Ojos came about.

It’s been a few months since the book was officially released.  I have no idea how it’s selling…hopefully well.  We recently spoke at the Autism Society National Convention and met with a number of families, presenters, professionals and they were extremely excited to know about the Spanish version of the book.

Our PR firm started last Monday.  We had enough money to pay for about 3 months of outreach.  I can’t wait to see what’s in store for us and for both books with their knowledge, savvy and muscle behind our efforts.

We have already presented to a group of Latino families (we spoke English and it was translated) and the response was amazing!  We sold more books than we ever have for a small presentation.  You could just see how thirsty the parents and care takers were to get helpful information in their more comfortable tongue.

For Christmas this year I have asked for $$$ so I can purchase Spanish lesson software.  I speak a little French (worthless in Texas) but am dying to learn to speak Spanish.

My goal is to not to need a Spanish translator when I meet a father or speak to a group of parents…how cool would that be!

We live in Fort Worth, Texas…if you know ANY organization or group, church, whatever that would benefit from us sharing our story and message of hope in English or Spanish…please feel free to contact us for an engagement…we would love to help in any way we can.

So buy the book in English and in Spanish and tell everyone you know about them.

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book inSPANISH as well…buy it now!

Autism and Cord Blood Stem Cells…what’s a father supposed to think?

Recently I was sent an online article from BioResearch Online entitled “Autism and Cord Blood Stem Cells: FDA Gives Green Light For Ground Breaking Clinical Trial.”

I know I may seem pretty darn smart (I tell myself that often) and I know I look super smart BUT I am at a complete loss when it comes to cord blood, stem cells, bioresearch and all that!  Of course I’ve heard of the terms, but after reading this article it certainly gave me a sense of hope.

Could my child really ever be “cured” of autism?  Is it right for me to have that hope?  What does this all mean?

A couple of things came to mind…I immediately wanted to know how I could sign up for the clinical trial.  What parent wouldn’t be interested in that?  I also started thinking…”what if we were part of the trial and were the placebo element of the trial?”  Would that suck or what?

If you’re a parent of a child on the autism spectrum you probably know where I’m coming from.  We’ll do just about anything to help our son, William, who is now 6-years-old.  Just imagine him talking to me.  Just imagine him not stemming or making that awful squealing noise CONSTANTLY during the day.  Just imagine him leading a “typical” lifestyle.

One of the key chapters in our book, Look At My Eyes that my wife and I wrote in 2011 (now available in Spanish as well Miarme los Ojos) discusses how important it is for the family to be unified in their decision for treatment, therapy and expenses when it comes to their child with autism.

I’ve seen (and experienced first hand) too many couples and families who have had major arguments and divisions when it comes to these issues.  No father wants to deny his child services…but not many fathers can actually afford to do every therapy, treatment or service…at least not this father.

When William was younger my wife, Melanie, would drive all over the DFW Metroplex (if you don’t know…it’s very big) to go to this doctor and that therapy and this activity…hoping to find a solution or therapy.

It was a HUGE strain on her, our son, the family checkbook and our relationship.  THE BIGGEST KEY to making the marriage survive when dealing with special needs children is to BE ON THE SAME PAGE!

I’m sure there are risks involved with this cord blood stem cell research…has to  be, there are risks with just about everything.  I don’t know if my wife would be as excited as I was when I read the article.  She might be more hesitant when it comes to the health of William and potential risks.

There are many “cures” out there…many that are medical or have medical claims but PLEASE BE CAUTIOUS…this is your child we’re talking about here.  A “cure” does not exist…so be careful not to put all your hope and trust in a claim that could potentially be harmful to your child.

Finally I thought, “do I want my son ‘cured’ from autism!?”  Is that twisted or what?  Yeah I want him cured.  Yeah I want him to be typical.  Yeah I want him to be happy.

But what if he IS happy?  I know he gets frustrated with lack of ability to communicate at times.  I know we are frustrated when we are dealing with his behaviors and such.  But does that mean he’s not happy?

Is it my happiness that I’m seeking or his?

Would William BE William if he took a magic pill or cord blood and didn’t have autism?

Have you considered that?  I don’t think I had until I read this article.  Almost like in The Matrix when Neo has a choice…take one pill and stay the same…take the other and your life is totally different and you can’t go back.

It’s not that easy of a decision is it?  On one hand you don’t want to deal with autism and all that stuff…but on the other hand, if your child is “cured” all of a sudden, are they the same child?  Different?  Better?  Worse?

In conclusion…bring on the trial.  The way our FDA and government work it’ll be 2040 before they approve or make a recommendation.  At least it’s a start–so who knows, maybe they’ll find a cure that will help children and change our society forever.

Meanwhile…take delight in your child.  Your child is YOURS…a gift, a blessing–no matter how much the stem or squeal or wipe poop on the floors.  Focus on the joys your child brings you when they are able to communicate….when they do look at your eyes

Be a team with your partner…be on the same page with finances, treatment and therapy.  Cord blood stem cell or not…love your child for who he/she is…yours!

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!

Don’t look at my son like that!

I hate “that look”…if you’re a parent (especially a father) of a special needs child…you know what I’m talking about.

This has been a busy summer for our family…a great summer for my children, getting to be with family and friends and especially cousins…they love their cousins.

My 6-year-old son with autism has really had a great summer.  He attends summer school and loves that–he’s been going to school pretty much year-round since he was the age of three…that might sound a little mean, not to give a kid a summer break, but with early intervention and solid reinforcement and ABA therapy, he’s happy and improving with his verbalization and socialization.  William loves being around his cousins and so having a few family vacations mixed into his busy summer school schedule is quite a treat for him.

This past weekend we were able to join my side of the family on an extended weekend in the Texas Hill Country to hang out on the Blanco River and all be together.  He did a fantastic job!  His cousins are mostly girls and a few years older and, together with my very strong-willed 4-year-old daughter, they keep him very involved.  It brings me great joy to see him being around his cousins because he is just one of the bunch.  He doesn’t have the typical friend relationships because he doesn’t really interact with other children.  He doesn’t sit in a corner or anything like that when other children are around–he’ll be near the action–but he’s not really part of the action.

During our vacation we took everyone to a swimming hole that was a ton of fun!  It’s in a state park where there are huge trees, river access, tubing and the all-important rope swings.

Now my son is not one to really be adventurous.  I don’t know if he’s afraid of things, maybe just a bit cautious.  This is his first year to really enjoy swimming–thanks to 6-8 months of swimming lessons–and while he’s mostly a dog paddler, it’s very freeing for me and my wife to not have him either stand on the side while everyone else is in the water, or cling onto us in the water for dear life.

So back to this rope swing…so much fun!  They had one just for children and the line was long to enjoy it.  Kids would grab it and swing into the very chilly water of the river and do it over and over and over again.

I was just happy William was in the water–it was really cold and for those of you who have seen William, he’s a string bean with very little meat on his bones to keep him warm.

I had no thoughts of William ever wanting to attempt the rope swing, but when I causally asked him, imagine my surprise when he not only said, “YES” but got out and headed right over to it.

For the next 3+ hours that’s about all he did…it was fantastic!  He would climb up the little ladder, grab the bar on the rope and hold onto it and swing into the water.  He didn’t hold on very long most of the time–so it was like he was jumping into the water–but it was a thrill to see him be a “typical child” and get so excited to be doing what all the other children were doing.

So I was pumped up!

Then came “that look” (and you thought this was just going to be a blog where I gushed praise and joy…nope)

There I was, helping him stand in line (not easy) and get a hold of the bar of the swing.  His cousins and other family members were taking pictures and just having a great time enjoying that he was having a great time.

As we were standing in line he was shivering and flapping.  He still flaps when he gets excited and he was not only really excited but he was probably really cold because the water was cold and there was a wonderful tree canopy.  So as we were standing in line shivering and flapping I noticed two younger boys staring at him and snickering to themselves.

These boys were probably 8 to 10 years old if I had to guess.  They were also enjoying the rope swing…and they were enjoying noticing that my son wasn’t typical.

Here I was, on Cloud Nine because my son was doing something daring and brave, he was having this fantastic time and I was so proud of him…and yet I was crushed.

That look…you all know what it is don’t you?  Maybe you don’t see it directly but you certainly can feel it when you’re out in public and your child is doing something that’s reserved for our Special-Ism Children.  That look.

I wanted to push those boys into the cold river water.  I wanted to get into their 8-year-old faces and give them a piece of my mind.  I wanted to defend my precious boy, whom I love and am so proud of for all the progress he’s making.  I wanted to cry, scream, fight…everything.

I did nothing.

As I stood there, William flapping and making his inaudible noises, the boys giving that look and snickering at one another about how William was behaving, I just stood there…taking it all in.

Just like that cold river water, the splash in face of cold reality just crushed me.  The reminder that my son isn’t “typical.”  That he’s not just one of the boys.  That he is going to probably stand out in many situations for the rest of his life.

So on this day of joy and gladness…it was also a time of reality and sorrow…and that sucked.

What should I have done?  What should you do when you get “that look”…what have you done in the past?  Here are a few thoughts…I’d love to hear your opinions on what I should’ve done…

1. Ignore…easier said than done but I can’t go through life with a huge chip on my shoulder about my son.  I can’t be there to defend him from those looks and snarky whispers.  So maybe we just ignore?  Ehhh…that’s hard

2. Confront…I almost did that.  I almost tapped those boys on their shoulders and gave them a piece of my mind.  Not that I would’ve really gotten onto them,but maybe I would’ve gently informed them of William’s situation and how they should be celebrating his accomplishments like the rest of us

3. Make a scene…again, would that have accomplished anything?  One of my concerns about making a bigger deal out of it was that I didn’t want to put a damper on William’s experience.  Although he doesn’t talk much and oftentimes doesn’t appear to be paying attention–I KNOW that he would’ve understood what was going on and I don’t want for him to be more and more aware that he’s not “typical”…that he’s different from others.

4. Removed ourselves from the situation…but why?  Why should my son be punished and removed from a fun situation just because others are making fun of him or commenting about his actions and behavior?  I’m glad I didn’t do that.

5. Blog about it…bingo!  That’s what happened.  SO here I am, expressing my sorrow and frustration…but was that the right thing to do?

I know I can’t be there for my son every time someone gives him “that look.”  Maybe he doesn’t care if people are looking at him like that.  Maybe he doesn’t even know they’re looking at him like that.  Maybe it’s all on me.

Whatever it was, it was an incident that still sticks in my brain.  There we were, having a great time–and we still had a great time–playing, experiencing, participating, enjoying…and yet there’s always that little reminder that our children aren’t quite the same.

Anyone have any thoughts?  Would love to hear

To read more blogs from Seth and TheFowler4Group, check out their Website (www.lookatmyeyes.com) and while you’re there, buy a copy of their book, “Look At My Eyes”.  Or find them on YouTube.  To contact TheFowler4 Group email: info@thefowler4group.com…oh and they just released their book in SPANISH as well…buy it now!