Tag Archives: “look at my eyes”

“He was there…then he wasn’t”

How many times have we heard that phrase when talking to parents with a child on the autism spectrum?

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While we never experienced William acting “typical” (remember – we don’t say “normal” bc what does that even mean?) when he was an infant, we certainly talked to a number of parents who swear up-and-down that their child was acting and behaving differently before they gave medicines and shots.

This is NOT a blog to discuss vaccines and MMR shots and whatever…mainly because I don’t care to get into that tired discussion AND…who am I to say that someone’s child was acting one way until they administered a shot and then they started acting differently.

eyes4BUT…we have recently experienced something like that.

William is now 13-years-old…would put him somewhere in the middle of the pack when it comes to autism.  He’s not that verbal or self-sustaining but then again he is really smart at spelling and loves to jump and can follow instructions (when he wants to.)

The Pink Stuff

Over the holidays we noticed he wasn’t himself so we went to the doctor and got him a prescription of The Pink Stuff…you know…Amoxicillin

This wasn’t first time we’ve given him this medication.  William is a fantastic medicine and pill taker…too bad there’s not a job for that!

eyes5He started the potion and after a few days we started noticing a significant change in his behavior.  It was almost as if a light switched on inside him.  We noticed he stopped stimming with his favorite item.

We noticed he stopped the constant non-verbal blabber we’ve grown so accustomed to.

We noticed he was calm…he was agreeable…he didn’t say “NO!” when we asked him to feed the dog, brush his teeth, put Chapstick on his dry lips and get dressed…he would do it with a happy heart and he would do it immediately.

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It was the craziest thing I think I’ve experienced

We drove to church on Sunday in complete silence…something we’ve never, never, never done because he’s always making sounds.

He came up to me and kissed me while I was working at my computer…no prompting, no nothing just a kiss and forehead bump (that’s out thing) out of the blue.

We wasn’t trying to upset our barking dogs.  He sat on the couch and watched a TV show with the rest of the family without squirming, getting up to tap, tap, tap.

I could go on and on.  It was a dream come true!!!  We were amazed.  His therapists were amazed.

 

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Then he was gone.

We started noticing anxious behavior this past Saturday.  Sunday he was still calm but there were spurts of sounds and stimming and the “no, no, no thanks, no thanks,” response we’ve grown accustomed to.

Tuesday was horrible.  I came home to learn that William lost three tokens (measures of good behavior) at school.  He didn’t want to hug me.  He didn’t want to clean his plate, brush his teeth, pet the dogs gently.

The noises were back too.  I remembered how much I hate, hate, hate that noise.

Where did William go????

Melanie’s done some research on Amoxicillin and autism and there might be something there.  Maybe it’s gut health – that is the problem du jour in America it seems that every network marketing company wants to cure.

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He’s had Amoxicillin before…he didn’t act like this before.  Will he do it again if we give him more of the Pink Stuff?

I’m not going to put a lot of hope in us giving him Amoxicillin again and him reverting to the New William…I don’t believe it’s that simple and I don’t want to get my hopes up.

All I know

All I know is that for about a week we experienced a calm and peace and love from our son that we’ve never experienced before.  We saw him interact with others in a manner that was foreign to us.  It was awesome…and I want more of it!

Buy The Book – Look At My Eyes

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

 

WORLD Magazine & the Fowler 4

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Seth & Melanie Fowler being interviewed by WORLD Magazine for upcoming podcast

Seth Says

In 2012, WORLD Magazine wrote an article on autism that featured our son, William.

Intense Isolation (2012) – World Magazine

After 6 years, WORLD reached out to us for an update on William and the rest of the Fowler 4.

On Sunday we had the privilege of sitting down with Katie Gaultney of WORLD to interview for an upcoming podcast regarding autism and William and other topics of interest. (we even made Katie cry!)

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Is there anything better than talking about topics you’re passionate about?  Look how serious Seth is!!!

It was a blast not only to have a microphone in your face (if you know me you’d know that there’s nothing more I enjoy doing than talking)  and giving Katie the update on the past 6 years but also to have William and Margaret (10-years-old now) talk and hopefully be featured as well.

I do not envy how Katie will whittle down 1 hour and 45 minutes, of us talking about a topic we are very passionate about, into a short podcast – but maybe they will make multiple podcasts or do whatever it takes to get the information out to the masses.

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Katie of WORLD had no idea of what she was getting in to – crying, long-winded speakers and Charley Bear (dog) that took special interest in her.

When the podcast is released I’ll be certain to let you know and will blast it to the masses – the more the better – maybe they’ll have us as regular guests!

Special thanks to WORLD, Susan Olasky and Katie Gaultney for taking interest in our cause and passion.  Let’s do it again

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

 

Buddies

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It took us a while – but we are buddies

Seth Says

If I’m being honest, I probably never thought my son, William, and I would be buddies.  After he was diagnosed I went into a depression and malaise regarding him and regarding what I anticipated the future with a child on the spectrum would look like.

Initially those anticipations proved to mostly be true…William and I would do things together but I never got the feeling that we were developing a relationship or bond or that either of us really craved being together.

William is still really quiet.  He has language but doesn’t initiate talking (unless he wants something badly enough) and he’s not one for having conversation.

That’s okay.  I get it.

What he can do (and does a lot) is respond to my questions.  He tells me when he wants something.  He tells me if he likes one thing or another.  He will answer in his own way – maybe not with words but with a hug or kiss or simply by not leaving the room immediately if I enter.

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In the last blog I mentioned his penchant for doing puzzles.  That has become something we do together.

We went a TCU vs Texas basketball game together earlier in 2018…that was something I never thought we’d do.  He’s never going to follow players and their matriculation through high school to college to the NBA like I did (and still do), but he enjoyed clapping, high-fiving, eating popcorn and other treats when we went to the game.

He still says, “Daddy stop singing…stop singing, stop singing” when I’m into a singing mood…and that annoys me.  He will still refuse to work on a puzzle together if he’s not in the mood.  He will still sit silently in the car if I don’t try and pull word out of him.

And that’s okay.

We are now buddies.

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

hear say

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I’ve taken such a nice long break that I forgot my password.

I remembered it. <smile>

It has been good. I needed it. We all need it.

For me, vocalizing is not usually difficult or strained. Facial expressions too… I can’t hide them. Gosh I really can’t.

My husband. If you know him, you know expression is his world. He’s a talker…much, MUCH more than I am. It comes easy.

For William, every word is mainly work. Something for others to hear.

I see the wheels turning, the eyes shifting… I know there are thoughts, but many times it is silence I hear.

With two expressive parents, it must me in his genes somewhere. Trapped at times.

I can’t speak for him, not always the way he would like me to. His sister has, does, and will often. Those two.

My questions are not always the right questions.

But I do try…probing constantly to get a true depictive response from him.

But, those are words. Really, just words.

If I look closer, he speaks often.

Each raised eyebrow, pause, snicker, and hand gesture… speaks to me. It’s loud sometimes and yes, I do sometimes yearn for it to come in one easy box of simply uttered words.

Sometimes it does and I relish…pondering on it for days sometimes. Ok years.

His expressions. I’ve learned to live and breathe for. I’ve learned to hear him with passing hours of no words in sight. It’s all there.

It’s a different bird though and not easily caught.

In fact, I know I have missed it many times by waiting for words.

Don’t get so caught up in the words that you miss the expression.

Sometimes you just need to just shut up to watch the expression unravel. <smile>

You’ll hear so much more.

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
   

House of Cards – Autism Style

Stacking cards is a new opportunity for William to pass the time

Stacking cards is a new opportunity for William to pass the time

“Seth Says…”

Don’t worry…I’m not going to blog about Francis and Claire Underwood and tie that into the autism world…although that would be quite a blog huh?  Maybe we should get the show “House of Cards” to write a Bill that actually has some teeth to autism funding–wouldn’t that be an interesting plot!

But I digress

So this past weekend was the Fourth of July.  In the past, weekends have been very difficult for our family because it’s hot in Texas and we tend to run out of things to do–and when William runs out of things to do his behavior goes down the drain in a hurry.  I can’t speak for Melanie but I know I was a bit nervous about this extended weekend and how we were going to pass the time–and how we were going to keep William as occupied and happy as possible.

It just so happened that on July 3rd I had a little poker night at the casa…I stink at Texas Hold ‘Em but love playing…and so I had a few new stacks of playing cards lying around the house on the 4th of July.

After breakfast Melanie started playing with them and trying to build a house of cards with the playing cards while Margaret and I played a card game that she was making up on the fly (she always seems to be the winner of those games…hmmm)

William was stemming with  his brush and spoons and I could tell he was getting bored.

Then all of a sudden he took an interest in what Melanie was doing.  He wanted no part of the game Margaret and I were playing, but he became fascinated with Melanie stacking the cards and building a structure.

She offered William a stack of cards and PRESTO…he was hooked.  I don’t think he’s going to become a professional card stacker…but it was really cool to see him sitting there trying to stack the cards.  He’d get pretty frustrated when they would fall but we encouraged him to be gentle to the cards and keep trying.

He probably played with those cards for 30 minutes.  That might not sound like a lot but as a parent you know that’s a huge victory–the kid really doesn’t like to play with much.  He isn’t really into Legos or TV or games…he lines up cars, jumps on his mini-trampoline and taps on his favorite brush and spoons.

I don’t know if card stacking is going to be a new fixation for William but it was really cool to see him working at getting the cards just right and the excitement on his face when he would get one or two levels stacked.

So if you’re looking for something for your child to do…go spend $1.99 and buy a pack of cards and have fun!

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

 

sway

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Everything starts with small steps. Everything is taught. Everything.

A few months ago, it occurred to me that I wanted William to learn how to slow dance. I’m not sure why I desired this to be.

Maybe because I thought he would like it. He didn’t…. not at first.

Maybe because I liked the idea of him being close. I did…. always and forever.

Who am I kidding, he is a scrumdiddlyumptious bar and any way I can be close to him, I’ll take it!

Maybe because most 8 year olds don’t slow dance with their mommies and I wanted us to accomplish something out of the norm. Something to call our own.

No time frames, no comparisons, no charts, no age-based norms to look to.     Just us.

But, like most tasks, it took a lot of work. I began to see the small steps seep through just as they always do. It is always work… for him, for me.

We started with the simple task of holding one hand and I had his other hand around my waist. This took about a week. He would flop on the floor like a fish when I would even utter the word “dance.” “No no no!” he would say. “No dance!”

It was new… William doesn’t like new. I kept going…. as his resistance towards the new doesn’t stop me nor does it control my emotions, at least not the way it used to.

Two weeks went by and the “fish flopping” decreased.   He began holding my hand and the arm around the waist was quite loose but it was a start.

Next came the swaying…many times we fell over. Did I mention he is almost 4 and a half feet tall? He’s very strong too (thanks to the monkey bars) so if he falls, I fall.

After the third week, the swaying softened up a bit. A few moments turned into a few longer moments.

A few times the mirror caught my eye and I could see us both standing there.

Quiet, perfectly engaged, and in the moment.

It happened.

Maybe one day he will want to dance with a young lady.

Until then, I will be standing there ready to be swayed.

Nothing can take that away… not even autism.

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

Special Thanks to Jewett Photography
DFW Photographers
http://www.jewettphotography.com

 

 

 

 

 

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

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?

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

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

It’s OKAYto have a Pity Party (sometimes)

I get a lot of emails and Tweets and whatnot from other parents with children on the spectrum.  They typically are very positive.  They’ll talk about how the read our book (and you should buy one too!), and will share some of their stories, frustrations, questions.

Every so often I’ll get comments where a mother or father (c’mon dads, need more of you to step up to the plate and be active in your child’s life!) will actually feel badly because they “aren’t there yet” when it comes to accepting and dealing with the diagnosis of their child.

I get comments from people saying, “I don’t want to be peppy and cheery all the time,” and “I’m not at a point where I can deal with our situation gracefully.”

I totally get that.  I have been there…I still go there…P-L-E-N-T-Y.

As my wife so correctly put it in our book  (did I mention you need to BUY IT), “You will never stop grieving, but you’ve got to get over it because if you don’t, it’s not helpful to you, your child, your family and your marriage.”  Lot of truth in that.

I still mourn.  I still get bummed when I think about the future and what may or may not be in store for my 7-year-old son….and that’s okay.

So I want all of you to hear this…IT’S OKAY TO HAVE A PITY PARTY from time-to-time.

No one is going to breeze through your situation.  Like our children on the spectrum, our situations of grief and trials are completely different.

It’s okay to be sad, angry, confused, just flat out pissed off at what’s going on.

My son has started getting very emotional about things at home.  If he doesn’t get something, he’ll start weeping and won’t let anyone see him or touch him.  If the dog jumps on him, you’d think we just shot the dog…seriously, he is weeping at the drop of a hat.  IT’S DRIVING ME (US) CRAZY!!!

I visited with a friend of mine about diet and family meal plans and we talked about how expensive and time consuming and all that it will be…yeah no kidding…it’s okay to be upset at that…have your pity party and then get back in the game.

I’m not perfect.  You’re not perfect.  No one is going to go through our trials without losing it from time-to-time.  I just want you to know that it’s alright to do that…as long as you get over it quickly, don’t take it out on your child, and don’t make it a crutch.

Give yourself the permission to have a pity party about your situation.  Give yourself permission to be sad, angry, scared.  Give yourself permission to not want to have a rosy disposition about the state of your situation.

But then shake it off, get back in there and get after it.

Good luck…oh and buy our book!

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