Aware.

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I am aware.

It is April…Autism Awareness month. As this month comes to a close I can’t help but ponder… What are you (the general public) aware of? You may be aware that people with autism exist in this world and exhibit many struggles.

Let’s get real. Unless you live in isolation with no exposure to the outside world, you’re aware.

But do you really get it?

I am aware… yep, I am certainly aware.

I am aware that the autism spectrum is “growing” and funding is shrinking.

I am aware that many caregivers receive barely there training and that many teachers receive “online training” (whatever that means).

I am aware that most parents (like me) continue to look for quality transitioning/adult services to only come up empty handed.

I am aware that 9 out of 10 adults with autism are either unemployed or underemployed, regardless of their IQ or education level.

I am aware that we are fooling ourselves if we think one month out of the year will help our definition of “awareness.”

I am aware that society has a wayyyyyys to go and so does William… and so do I.

I am aware that the White House failed to even muster up a flicker of blue for “light it up blue” and without support, we become the hamster wheel.

I am aware that silver bullet “cures” and empty promises trump what’s really important, which is to focus on the science of really helping kids with autism.

I am aware of how blessed William is to be receiving scientifically proven treatment methods and how the wait list for theses services continues to grow.

I am aware that the majority of the population is unaware.

I am aware. yes. But, I’ll never stop…

To read more blogs from Melanie, 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 Prevalence Rates Increase…you’ve got to be kidding

IMG_2297A[1] (2)According to the Centers for Disease Control and Prevention, the prevalence of autism in children has recently INCREASED to 1 in 68 children…a 30% increase since the last report in 2008.

1 in 68 is children..not boys.  If the report was for boys only, I can only imagine what the number would be.

This is so disheartening as a parent with a child with autism.  Early Intervention is so important to us and a significant part of our book “Look At My Eyes” and our speaking engagements.  And the numbers keep getting smaller and smaller.  It feels like we’re running a marathon in sand….deep, wet, slooooooow sand.

The CDC report goes on to say how a person with ASD (autism spectrum disorder) can cost as much as $3.2 Million over their lifetime to take care of.

1 in 68 and what is our society doing?  What is our government doing?  What is our local government doing?  What are our schools, churches, community groups doing?

We MUST come up with a plan to educate, train, teach these 1 in 68 children!  We MUST have outlets and avenues for helping these 1 in 68 children live as independently as possible.  We MUST have opportunities for these 1 in 68 children to learn a trade or skill where they can work and pay taxes and be productive members of society.

I don’t have $3.2 Million to spend on my son.  I refuse to believe that he is merely a statistic and property of our government.  We MUST start the discussion NOW as to how we are going to help make these 1 in 68 children as successful in life as possible.

So let’s talk…

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

 

a new meaning to laugh out loud

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I have a loud laugh.  This can only be truly heard at it’s highest peak if… it’s real.     It cannot be duplicated.

I lost this particular laugh, <my favorite, my happiest one> around the time William was diagnosed.  I was busy, very busy. I was tired, very tired.

I was…sad.

I don’t hide from those first feelings post diagnosis… it was real and I am certainly not ashamed of those feelings.

It. Was. Real.

But, I had to move.  I had to live so he could.  I had to laugh again. Once our “new norm” took over, I had to go with it and soak it all up so that I could be proactive and later… educate others.

It takes time to enter the “new norm”… anyone telling you different is not a parent to a child with autism. I have two children.  One has autism and one does not.  It IS different.  Some general thoughts, behavior, and parental mistakes are the same (like many friends with typical children love to tell me), but inside lies a difference even I cannot always process or comprehend.  It’s not a pinpoint discussion… it’s just there, everyday.

My laugh didn’t come back in a flash… it took time.  I longed for it.  I begged for it. I gave many great and false performances.

But, I do know it can come back with a vengeance.  I fight for this loud, sometimes annoying laugh. I need it. William needs it.  The man sitting next to me in this picture needs it.

It came back… and it doesn’t hurt to have a ridiculously funny, always inappropriate, inside jokes and all of a husband either.

It feels good to laugh loudly again.  If you haven’t found yours, go look for it.

To read more blogs from Melanie, 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

Photograph taken by the the famous Claire McCormack Hogan at www.clairemccormack.com

fighting for Gray

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Color coded tabs, labels of any kind, a well stocked and organized pantry… these all put me in a state of sheer bliss.  Put me in an office supply store and I could meander for hours with a crazy smile on my face. Seriously.

Organization and structure are key ingredients for autism.  All children need structure BUT for children with autism, it is absolutely necessary.

Man oh man, I had this down.  Timely activities? Check!  Well organized routines? Check!  William thinks in black and white.  It is an organized way of thinking… it goes way farther than my colored tabs and labels.  Yes, it’s black and white… it’s always the same.

BUT.  Where is the Gray?

Where is the line of flexibility?  Over the years, I have come to love and nurture the Gray.  It’s the Gray that makes the big splash.  He thrives on Gray… that hard place he never wants to go to.  The place where his structure is questioned and put up on a shelf.

Thank you shelf.

I realized we needed more Gray years ago… The setup:  I pick William up from school.  We drive our route home.  I remember, “Oh, we need groceries.” I turn right instead of left to stop by store.

Fits of rage fill the car like a huge fog… crying and self infliction follow shortly after.

What just happened???  Gray entered the picture.  We began doing this more.  A missed turn here, a stop there… completely out of routine.  Over time, it got easier.  He became, well… pliable. FLEXIBLE.  That’s what you want people… I promise.  Routine is great, but you must, absolutely must, give room for a little Gray.

Gray is where you will see the most progress. It is where the the most strides in accomplishing goals are most visible.  We can now eat at different restaurants, do unexpected errands, change our minds and go a “different” route…. uh, we can be “normal” in a lot of ways thanks to Gray.

Keep fighting for the Gray while keeping your black and white close by.  Everyone needs a little Gray.  I am beginning to really like this color…it’s done wonders for William.

I need it too… <smile>

To read more blogs from Melanie, 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

a Skipper Too

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William’s legs are long.  Like, really long.  He’s always looked the same.  To put it into perspective, at birth, he weighed in at 6 lbs and yet his length was 22.5 inches. Yep, I told you, long!  He almost never wears a pair with the “worn” look because they’re off and then it’s on with another new and longer pair.

But, as I look at these long gangly legs, I am reminded about so much more than pant purchasing woes.  Over the past 8 years, these legs have entered more therapeutic facility doors and have endured more therapy hours than one can even conceive.

With these legs, he has achieved more success than I hope to in a lifetime.

These legs never crawled as a baby and standing and walking were HUGE milestones in more ways than one.

At one point, I thought these legs would never be able to run…

The plethora of hours in occupational and physical therapy certainly helped these legs reach their goal.  In fact, the goal was surpassed by mastering the “light” jog.  As William grew more strong and mobile, the “jog” one day became a “run.”

Every year, the Fowler Four participates in a phenomenally fun and meaningful 5k race and every year I am reminded of these long gangly legs and how far they have taken him… how far they have taken, us.

I continue to be blessed by each step that is mastered, his legs, his strength, his ability to tolerate hours upon hours of hard therapy and academics.

Guess what???  You will never.  These long gangly legs can now skip. <smile>

What has been accomplished that you never thought possible?

Merry Christmas, Here’s Your Spoon!

I wrote this exactly one year ago… while most of it still remains to be true, I am ecstatic to announce that we have added legos and sports related accessories into the stocking!  Progress can and will happen… Get Ready!!

Merry Christmas, Here’s Your Spoon!!

Our four (almost five) year old girl knows what she wants, when she wants it, and where she wants it… she just knows.  Christmas is no exception… her ideas and thoughts begin to explode from the moment her eyes open until they close again.  Her list begins and is never-ceasing.

But, for my seven year old son, it’s not that easy. Autism can be tricky. I have to think outside the “Christmas Box.” A list for William???  Christmas last year was hard on many levels and making a list of toys for family members to give was an exhausting task.  My son doesn’t really PLAY with toys. There, I said it. He isn’t interested in super-heros, legos, sci-fi, sports etc.  Many of our “toys” sit in a closet upstairs, collect dust or are re-gifted… yes, I said “re-gift”… don’t judge, you know you have done it too!

But, THIS Christmas will be different.  Instead of trying to think of toys that I think he should like or that I think others would like to get him (because it makes THEM feel good), I am going to actually make a list of items “HE” will like, regardless of how crazy, boring, different they may seem.

Here we go… <eh hem> William likes new shoes. He likes to look at them, he likes to wear them, he likes to touch them… he likes to smell them. He will get a pair in his stocking this year and will say “NEW SHOES!!”  He will want to put them on and I will smile a big smile.  Doesn’t seem so exciting???  It is to him and so my list begins…

On a regular basis, William loves to bounce, work on his iPad, and loves playing on the monkey bars (his poor calloused hands).  These are all “typical.” But, one of his favorite toys is the… ready for this… the plastic spoon!  Yep, the cheap white party plastic spoon.  He holds it, taps on it, walks around with it, jumps with it… it’s pretty much with him all of the time.  He would choose it over a piece of pie a hundred times over.  Does it make him happy, yes.  Is it “typical?”… well, not to the majority, but it’s not about YOU (the parent) and what you think your child should like.

So this year, whatever they like, throw it in the stocking for heavens sake!  Sit back (while sipping a mimosa) and watch their amusement as they open something they actually like and want.  For William, it won’t be the multi-hundred dollar Wii game and accessories… it will be new shoes, a pogo stick, and a plastic spoon… or two.

To read more blogs from Melanie Fowler 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! (www.lookatmyeyes.com)

Ugh, ANOTHER thing I hate about Autism

The list is long and distinguished regarding the things I hate about autism…but this is the one on my mind…would LOVE to hear if this affects you and  your child and if so, what do you do about it?

William has these episodes of frustration or confusion where he starts spiraling and just can’t regroup and bounce back without major meltdowns or fits of rage.

For example…yesterday my wife picked him up from school and  he for some reason didn’t want the snack she gave him in the car.  He got frustrated with the snack and then when she took it away, he started freaking out.

Well what do you want?  The snack?  To eat it?  There’s almost like a no-win solution.

It got progressively worse.

We have these ABSURD radio stations in DFW that think it’s funny and cool to start playing Christmas music 24/7 starting the day after Halloween…it’s extremely annoying to me because I get very tired of the same 100 Christmas songs and why rush the holidays?

So William hears a Santa song…then they go home and watch a “Max & Ruby” (he loves those) and it’s about Christmas and so William can’t understand WHY there is no Christmas tree in our house.  He doesn’t understand the concept of time or seasons or anything like that.

He has a total meltdown…he cries and throws his favorite item (these days it’s hair brushes) and just can’t regroup and get it together.

So we turn off the video because he can’t handle it…to which he gets even more upset.

Have I mentioned a no-win situation?

We can’t start talking about going on a vacation or visiting family too soon because it doesn’t compute to him that we’re going to BeBe’s house…in a few days.  He thinks that because we’re talking about going somewhere, that it is going to happen immediately.

It’s really frustrating because we want to involve him in our activities and experiences and want to share the joy and excitement of anticipation and holidays and all that…but more often than not it ends up with him getting very upset and emotional and having a fit of frustration and rage.

Surely this happens to you too?  What are some tips to not have this happen or when they are spiraling, are there any ideas of how to regroup as quickly as possible and not have it turn into episodes?

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