Tag Archives: autistic

Celebrating Autism: Waiting in Line

Happy New Year everyone…let’s get to work

I’m sitting here watching some NCAA football, the fire is on, the dog is asleep at my feet, nice glass of vino within arms distance…perfect scenario to blog!

I was going through the family computer and cleaning out files and documents that we don’t need.  My wife has a “William” folder with all sorts of documentation and notes and all that fun stuff.

In the file are notes from our 18-month legal battle with our insurance company, notes about what William was doing at certain ages, much of the stuff she used to write our book “Look At My Eyes”

I opened one document that described William at 2 years and 7 months of age–just before he was officially diagnosed with autism and our lives continued to change.

One entry said “has serious issues with patience.  Won’t stand in line, refuses to wait–flips out if he can’t have it now!”

So today as my wife was sick in bed with flu-like symptoms and the kids were getting cabin fever, I took them to the Children’s Museum (a HUGE staple in our weekend routine all year ’round)

They have amazing exhibits and the kids love to go there.  As with many families on the spectrum, we have our routine.  We get our tickets, we go to the gift shop, we say “hello” to Ms. Lisa, we take off our shoes and go down the Dyno-slide, then we go and do other things…but it always happens like that.

As William and his sister were going up-and-down on the slide I realized that William was very patiently waiting in line for his turn.

Kinda made me chuckle.

Another exhibit they love is some spinning mechanism–I don’t know what it is, you step on it, hold on and it spins you and you get all dizzy–kids love that stuff you know.

As usual, there was a line.  Immediately William said (in his broken-but getting better-communication skills)…”not your turn, wait in line…not your turn, wait in line…not your turn, wait in line”

And that’s what he did.  Over and over and over, he waited in line, was patient and  calm, took his turn, flapped a bit, got back in line

“Wait in line…it’s not your turn.”

So ironic that I found the report of almost 4+ years ago where my son was not willing or able to stand in line, be patient, wait for it…and here we are…not saying he’s destined for greatness–but HAVE HOPE PEOPLE…every year that passes we notice successes (sometimes big, sometimes small) and hurdles that he clears.

Way to go my son!  I am proud of you for learning to stand in line, wait your turn, be patient…

now you just need to teach your old man that patience thing…Happy New Years

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

Autism & Presents Don’t Always Mix

Don’t you just hate it when people ask you, “so what do you want for birthday or Christmas?” and you have absolutely no idea what to tell them?

Huh? That’s never happened to you?  That’s a foreign concept to you because you always have an itemized Wish List ready for birthdays and holidays?

I would imagine that many of us have a Wish List or could put one together at a moment’s notice.

I know my 4-year-old daughter has one…that’s for sure.  She wants matching doll and girl clothes, some toy horse, a harmonica, some running shoes…and just about anything else she can think of.  My wife has absolutely no difficulty when relatives or friends inquire about gift ideas for Margaret.

Our son, William, is another story.  William just turned seven in November and here comes Christmas…and he has autism.

It really stresses my wife out during this season when people ask, “what can we get William for a present?”

Why is that so hard?

Because William pretty much doesn’t like presents.  How crazy is that to say about a 7-year-old boy?  But it’s true.  He has his favorites…mini-trampoline (we’ve discussed that previously), he got a po-go stick recently and seems to enjoy that, he loves to climb on the monkey bars (you should see how torn up his hands are), and that’s pretty much it.

We have a closet full of cars, Legos, puzzles, games, animals…all that he will take a look at and maybe will tap-tap-tap on from time-to-time…but he just doesn’t get into presents!

And that’s OKAY.  Parents out there who are in this situation…it’s okay.  Celebrate the items your child likes to play with.  Celebrate if they like odd and strange things more than they like cars and video games.  Celebrate when your child actually finds an object to carry around (William used to carry this car around, didn’t really play with it but just carried it around and pushed the noise button…drove me CRAZY!)  

No…it’s not typical and parents, grandparents, relatives won’t understand.  But who cares.  It’s not about them, it’s not about YOU, it’s about your child.  If your child is happy playing with a paper towel tube, then let them play with a paper towel tube.

We have started getting board games and memory games and things that William likes (enough) but that we can do as a family.  He’ll play for a little while then lose interest and go back to the mini-trampoline…and that’s okay.

So don’t stress…when someone asks, “What can I get your child with autism for a present?” don’t worry about it.  If they need clothes, get them clothes, if they need basic items, have them get the basic items.

Most of all, make sure your child is happy, knows they’re loved, and knows that they are special.

Enjoy!

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!

Celebrating Autism Mischief

No, no, no…we don’t condone mischief…BUT…I  had to share these stories.

Those of you who know our story understand our major struggles when our son was ages 3 – 5 and having potty issues.  Needless to say it was not fun, pretty or anything that I would ever wish upon any parent.

Thankfully in the past year and-a-half, our son has made tremendous strides when it comes to using the potty, staying dry during the night and all that fun stuff.  Talk about a MAJOR sigh of relief.  I think we probably set a world record for washing sheets, cleaning poop off the walls and carpet.

HOWEVER…last week our, now almost 7-year-old son, wet the bed.  We certainly weren’t thrilled about this and he knows there are consequences to his behaviors when he understands what he’s doing (and believe me, he understood what he was doing), but this time it actually gave us hope and made us smile.

Typically our children will wake up between 6 – 6:30 AM and will come down and get in bed with me and my wife.  We will lay there for 10-15 minutes and talk, tell stories and get ready for the day to begin…it’s a lot of fun.

On this particular day I noticed that my son’s shirt was on backwards.  Hmmmmm…I didn’t remember putting it on backwards but I didn’t think too much of it.  Until I went upstairs and noticed that he had wet the bed.

When my wife asked him if he had wet the bed, he told us, “NO!”

“William…did you wet the bed?”

“NO”

“William did you wet the bed?”

“NO”

“William did you wet the bed?”

“Yes”

What was so great was that he knew he wet the bed, but when he woke up with a wet bed, instead of running down and getting in bed with us with soaking clothes…he first took off his wet clothes…STUFFED THEM IN A DRAWER…and proceeded to put on dry clothes–thinking we wouldn’t notice.

What are we celebrating here?  What’s the point of this blog?

WILLIAM WAS DOING AGE-APPROPRIATE ACTIVITIES.

He knew he did something he wasn’t supposed to and, just like any “typical” 7-year-old, he tried to be sneaky and cover it up.  He specifically put on dry clothes and hid the wet ones because he thought we wouldn’t find out.

I wasn’t happy about a wet bed…but that he was doing age appropriate activities…and that is a HUGE step for him!

We’ve noticed that he has been more sneaky in recent months as well.  He will think we are not looking and will try to climb a fence…and he’ll look back and keep making sure we’re not looking…then when he sees that we ARE looking, he’ll smile and pretend that he’s not doing any mischief.

He has started to tease us or his sister–not in a mean way but a playful way.

Those are major steps–he is learning social skills and playful ways of being a 7-year-old.

Of course we don’t want him to lie, cheat, steal or do anything harmful to himself or others…but being mischievous is part of being a kid.

We rejoice in those brief moments of “typical-ness” and yearn for more…maybe not more wet sheets, but we’ll take whatever we can get!

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 benefits of Secondary Therapies & Autism

Yesterday I was fortunate to speak to a college class about communication and networking and business.  I love speaking in front of groups, so it was a lot of fun.  Thanks Professor A’isha Malone and Tarrant County College for letting me go on and on and on…

Of course the topic of autism, “Look At My Eyes” and my son who has autism came up.  I got about as many questions regarding that topic as I did communication and networking and business.

One lady came up to me and started asking about various therapies and treatments for autism.  My wife and I like to call them “secondary therapies.”

Applied Behavioral Analysis (ABA Therapy) is the only scientifically proven therapy (not a cure) to help with children on the spectrum, but there are a number of secondary outlets or therapies that really help children on the spectrum.

There is horse therapy, music therapy, art therapy, various exercises, sports, and probably many that I am not even thinking about.  These are great IN ADDITION to your traditional speech therapy, ABA therapy, occupational therapy and the likes.

I would highly encourage all parents of children with autism to look into a secondary therapy for their child.  They are not going to “cure” your child.  They are an outlet for your child to gain self-confidence, self-control, respect for authority, independence…just a wonderful opportunity to express themselves.

Not all secondary therapies are right for all children.  Just like the children themselves, every one is different.

We started our son (now almost 7 years old) in horse therapy.  We bought him boots and found a place that would teach him and let him ride.  It lasted about 3-6 months and then we stopped.  William liked it but he didn’t LOVE it.  He was pretty indifferent much of the time so we decided to find something else.

We found Kung-Fu.  He LOVES Kung-Fu.  He has a wonderful teacher who has worked with special needs children in the past, is very patient and kind but yet a stern authority figure.

William knows that if he does not pay attention or focus the lesson will be over.  At times the lessons have lasted 5 minutes.  Other times they can go on for 30 minutes.

The progress he has made is A-M-A-Z-I-N-G!  He has improved on his focus, concentration, ability to pay attention as well as his memorization of techniques and drills, jumping, rolling, kicking.

So I encourage you to find a secondary therapy opportunity that will help your child.  We are thrilled with our secondary therapy and who knows…maybe our son will become the first autistic Bruce Lee…that would be cool.

What secondary therapies do you find helpful?  Feel free to share

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!

Government and Autism

So I’m sitting here listening to the first presidential debat between Romney and Obama and  all I can think about is  “These two men with their different views and philosophies don’t care in the least bit about my son and the lives of special needs children and their families!”

Let me first say….these are my views.  These are my thoughts and opinions and I’m not trying to be political or whatever s0…my blog, my thoughts, my opinions…but I would like to hear you thoughts as well.

I’d like to think that I am fairly up-to-date when it comes to politics.  I support local and state politicians on both sides of the isle.  When it comes to some issues I have stronger leanings to one side or another…but when it comes to my son, the autism community and their best interests…makes no difference Red or Blue as long as they are DOING SOMETHING!

And herein lies the problem.

At the end of the day…very little if anything is being done to help the 1 in 88 children born today on the autism spectrum by the government.

Yeah, yeah…they say they have programs and this healthcare plan is really going to help and Medicaid will be there for the children if they qualify and blaaa blaaa blaa.

Do you realize that autism is one of the least funded disabilities out there?  I’m not saying we don’t continue to research and attempt to find cures for cancer, AIDS, diabetes, Downs, CP and so many other issues that afflict our children….but 1 in 88 children?  I didn’t stay in a Holiday Inn last night and I’m no scientist, but I have to think that there isn’t another ailment out there that affects 1 in 88 children born in each and every day that gets so little funding.

And so what do we do about this?  I’m not talking about throwing money at a cure for autism…my child has autism now, he needs education, training, assistance and will need a J-O-B in the next 10-15 years.

What’s the government doing about that?  What about the education system?  What about Obamacare and Medicaid?  What about the long term affect that 1 in 88 (and rapidly increasing) will have on our society?  Our productivity as a nation?  Our tax burden?

We don’t need another debate.  We don’t need another Congress locked in stalemate over the Pork they are trying to sneak into each and every bill presented so that various members of Congress can go to their constituency and tell them what a great job they are doing for their people…while siphoning money from others.

It’s a helpless feeling as a father, a tax payer, an active member of my community in local government commissions and committees…to see the need, the real need of so many children…and to see they are getting very little attention, training, education, help.

Another debate?  Another 4 years of whatever…please make it stop!

So what are the solutions?

We’ve got to get active.  Parents out there with children with autism…you have to get off your duff and get involved in local and state government.  The Internet is a powerful tool…use it for more than status updates and funny photos.

Find your representatives…find their emails, phone numbers, mailing addresses.

TAKE 5 MINUTES A WEEK TO WRITE A LETTER TO YOUR MEMBER OF CONGRESS!

Tell them about your situation.  NO, they’re not going to read it. Are you kidding…but someone might and if you write a letter a week…52 letters might at least make someone in their office go…”hmm, maybe we should pay attention.”

I doubt it but if everyone started writing a letter a week…now that would be something.

Tell your representatives your displeasure (or satisfaction) with the services your child is getting.  Maybe your state has a great educational programing and training for children on the spectrum…maybe there are things you’re happy about.

I know my state representative, Senator Wendy Davis (D-Fort Worth) and I know how she is trying to pay attention to the needs of the autism community.  She has been active and engaging and I can’t tell you how appreciative we are as a family that she has taken the time to listen to our story, to pay attention to us, to ask us how she can help.

Can she do it on her own?  Of course not.  She is one of many in the Texas Legislature.  But it only takes a spark.

I’m not holding my breath that much will be done.  In the end, once again it comes  down to party lines and all that fun stuff…and the losers are the children we’re trying to help.

But parents…get active.  Get involved.  Learn your city council members, know the school board, learn about the programs in your city for special needs children.  Learn what the school system in your city provides.

Unfortunately there is never going to be enough money.  There are never going to be enough teachers.  1 in 88 might be diagnosed but I guarantee you that 1 in 88 ARE NOT getting the attention they so desperately need.

Tell your elected official what you want…no they can’t do everything, but it’s better than not saying anything isn’t it?  Talk about vouchers…ohhhhh that icky word to many on one side of the isle.

I don’t care what you call it…MY SON HAS NO PLACE TO ATTEND SCHOOL AFTER THE AGE OF 12 THAT WILL BENEFIT HIM!

Think that bothers me?  Darn right it bothers me.  The public school system in our city isn’t going to meet his needs.  There could be schools but why am I paying a portion of my annual property taxes (unfortunately no state income tax in Texas)…to go to the public school system…for which I get ABSOLUTELY ZERO BENEFIT!

Wouldn’t you like to see a voucher (call it whatever you want) program in place that will allow you to send your child to a learning environment that is going to directly meet their needs?

Wouldn’t it be nice if there were a school or center that actually taught children on the spectrum to use their skills?  I don’t know if my son will attend college or not…and that’s okay.  If he is going to be something and have a job, I want him to do it to the best of his ability and to the glory of God.  BUT he has to learn that skill…where’s he going to learn it?

The government is not the only answer.  We don’t need bigger and bigger government.  We DO NEED legitimate programs that are sponsored by government funds to establish avenues for our children to learn, grow and become contributing members (tax paying) of society.

IF NOT…do we want to go there???

It only takes a spark…

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!

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!