Tag Archives: autism

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

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

Progress Can and Will Happen!

Daddy and Wiggy climbing8 years ago my precious William was born.  I remember exactly where I was when my wife called me and said, “it’s happening–hurry home…NOW!”

Has it really been eight years?  Wow…some good times, fun times, hard times, miserable times.

Eight years ago (heck 2 years ago) if you would’ve told me that I would have a son with autism who could climb to the top of a rock climbing gym…I’d have probably said you’re crazy!

But that’s exactly what we did on Saturday for his 8th birthday party.  We took William and 12 other children to an indoor climbing gym and he had a blast!

William scampered up to the top of the wall over and over and over again.  I was so proud!

This is the same boy who, from ages 2-to-4, would poop and spread it all over his room every single night.  This is the same boy who struggled to learn to tie his shoes.  This is the same boy who continues to work on his speech and socialization with others.

Eight years from now he’ll be 16 freaking years old!  Just typing that makes me feel old!!!

I don’t know where William will be at age 16.  I have thoughts and we have goals and realistic expectations based on history and experiences of others…but I’m not worried about that today.

Today I am here SHOUTING FROM THE ROOFTOPS OF THE WORLD…to all you dads (and moms) out there…your child can and will make progress!

I didn’t always believe it…I still wish it were more frequent at times…but it will happen.

Happy Birthday Mr. William…Wiggy…Wigwammy…little man.  I am proud of you and your climbing (and other) accomplishments and am so proud to be your dad…and to share November 18th as our birthday date!

daddy

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

Bored with Autism

Can we be honest for a minute?

Autism is hard!  Gee what a shocking statement huh?  But not just having a child on the spectrum or dealing with the day-in and day-out issues of having a child with autism…but on weekends.

My wife and I were talking the other day and we both agreed that our weekends are E-X-H-A-U-S-T-I-N-G!

HELP!!!

Some would say that I am a workaholic.  I love my job and get great pride and satisfaction and enjoyment from what I do…but it’s a cake walk compared to weekends.  Weekends are harder work than just about anything else for our family…and that SUCKS!

Do you have these issues as well?  Would love to hear your thoughts and stories.

I don’t care about sleeping in on a Saturday.  I typically get up during the week around 5:15 AM so if I sleep until 6:30ish on a Saturday (the customary time our son comes into our room for the day) then that’s fine.  Would I like to sleep until 7:00 AM on a Saturday?  Sure.  But I’m not cranky or anything if that’s not the case.

It’s that we run out of things to do.  Are families with typical children like this?  I don’t think so.

Our son is now 7-years-old and he doesn’t play weekend soccer.  He’s not in little league or Pop Warner or anything like that.  From what it seems, the majority of our friends with kids of similar age are spending countless hours going to games, practices  and whatnot on Saturday mornings…not us.

We get up early, I typically will make pancakes or some breakfast, the kids will play or jump around until breakfast.  Then it’s on…

What do we do after that?  It’s 8:30 AM and we’re already looking for things to do.

We live in Texas…if you’ve never been to Texas in the summer…it’s H-O-T early and often…so playing outside for more than 30 minutes is not fun nor is it a good idea…so until it cools down, there go opportunities to go to the park, take the dog for a walk, do anything outside…it’s just too blazin’ hot!

My son doesn’t like to watch TV.  He will play with the iPad for a few minutes but he’s not fixated on it for hours and hours.  He doesn’t like to play with his toys…any of them…he doesn’t have a hobby.  Right now he likes to jump on his mini-trampoline and tap, tap, tap on various objects…not really something that kills a lot of time.

We try and go to the local children’s museum…and we all love that and have passes…but there are only so many times you can go to that…pretty soon it starts to get a little mundane and our 5-year-old daughter wants to go other places.

We’re running out of things to do.  We try and take naps (mainly because mommy and daddy like naps) but most of the time our son will not rest during the day…so he paces the house making his noises and tapping and jumping…not conducive to a restful environment.

It’s really around 3:00 to 6:00 PM that is the hardest.  Then it’s REALLY hot and we’ve already done breakfast, watch a short program or two, played iPad, gone to museum, eaten lunch, tried to nap…and yet we still have a huge chunk of the day left.

Can you see how weekends are so exhausting?

I want to take a few minutes and kick my feet up and relax.  I don’t want to have to be “ON” all the time on a weekend.  It’s hard taking the kids on errands so we don’t get tasks done that need to be done.

I’ll take the kids to the grocery store or Lowe’s some weekends just to get them out of the house.

UGH…can you sense the frustration?  When my son gets bored then he starts disobeying, having tantrums, getting into trouble and becoming a major grouch.

I don’t want to loathe weekends.  We want to spend time as a family together.  We want to do fun things and have good down-time and all that…but it doesn’t seem possible.

We are going to meet another family with a child on the spectrum this weekend and are going bowling…looking forward to that.

Thoughts????  Suggestions????  Let us hear from you!

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

Think Big

After William’s first gymnastics group session, I walked over to the instructor and asked (trying not to completely lose it emotionally), “So how did he do?”  The instructor began to list off a few skills that needed attention. “His cartwheel needs a little work and we will work on his bridge next week but overall, he did quite well for his first day.”

Sounds pretty good, right?  And yet, those skills were far from my mind when I walked up to the instructor that day.

“No, no” I said… “I mean how did HE do?  How was his behavior?  Did he wait in line ok?  Was he nice to others?  Did he understand your instructions?  Was his stimming a distraction?  Did he slap Billy’s bulbous head?

Deep furrows in his brow appeared and then turned soft again, “Oh, yep he did just fine.”

He had no idea what this day meant for us, for William, for me!!

He had finally broken through to the “other” side… where group activities and after- school sports to typical kids are simply second nature.

For two years I sat in a chair and watched William do private lessons.  It’s the only thing we could do at the time…the only thing HE could handle.  Don’t get me wrong, some days were awesome and with the help of an amazing Kung fu instructor, William learned quite a bit.  <smile>

When he was five, we walked through a heavy black door and entered a room full of parents and other five year olds.  I was told this was a great instructor and that I should give this, Kung fu, a shot.  After class began, within the first five minutes, disaster hit.  William was running around, cutting in line, laughing at inappropriate times, pulling hair, and I think he spit on someone.  As I gathered up my belongings, with Margaret in tow, I approached the inevitable… we were going home… case closed.

It must have been my defeated red eyes.  He must have taken pity on me.  He offered to work with him privately.  This was good news in my “spiraling downhill, give me a full glass of adult beverage kind of day.”  This was something.

For months, we would drive, enter through the heavy door, and be finished within five minutes.  Five minutes was what he could handle.

After a year, the five turned into twenty-five and I was ecstatic.

During those private sessions, a hundred and ten to be exact, I still yearned for a group experience for him.  William was practicing, learning, and sweating all for something more than just skill…. he was preparing for “the group.”

Watching him now from the dirty gymnastics bleachers, I see a boy waiting in line.  I see a boy taking turns with others.  I see a boy attending to his surroundings.

I see a boy happy to be with others.

With work and perseverance, you will be in a better place than you were before.

Think Big…what do you have to lose?

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

God for Thought

William’s eyes are beautiful.  Everyone says so, and even if they didn’t, I know so. They are most hypnotizing when he is looking and thinking about something off in the distance.  Everytime… everytime I ask William, “What are you thinking about?”… his answer is always and never failing, without a doubt, and never pausing… “GOD.”

William likes going to church and can sing a number of churchy songs off hand if asked.  He LOVES Christmas… and not because of presents.  Actually, he could care less about presents and how many he has under the tree. For him, he loves a decorated tree, the ornaments, the stories… THE ADVENT CALENDAR.  He has the symbols memorized and can’t wait to wake up each morning to put a new symbol on our tree.  He likes hearing stories from the bible and enjoys going to Children’s Church with Margaret.

He loves to pray for others…his list can be different every night.  He might pray for someone he hasn’t seen in years (truly) and every time, I am amazed at how the name slips right off of his tongue as if he had seen them just yesterday.  He certainly loves hymns and learning new ones, and rest assured, you have never heard them being sung quite like this!

So why am I surprised that his answer is always… “GOD?”  Certainly William has been exposed since birth to the bible, songs, prayer etc, BUT, I think it’s much more than that.  William lives in this world differently and with that, he sees and feels differently.  Maybe, just maybe… different or not, William’s one word answer is just what we all need to cling to and remind ourselves of everyday…that God should be the center of our thoughts and actions.

It is definitely a reminder for me and as William continues to grow, I have the opportunity to witness God’s specific and perfect purpose for him.  This simple one word answer that rolls off his tongue so undoubtedly so, does not go unheard.  I’m in awe of the life God has given me.

The majority of William’s life has been full of one word answers and incomplete thoughts.  But, this question that is asked as his beautiful eyes gaze at the distance, is COMPLETE with only one word… “GOD.”
 

Autism is Expensive

Autism is expensive…yeah that’s the understatement of the Century isn’t it?

I actually had a friend of ours say that to me and I think I replied…”uhhh yeah, no kidding…”

Like that one time you went to Mexico and came back with some strange rash (hypothetically speaking of course)…autism is the gift that keeps on giving.

Often when I am talking to parents–in particular other fathers–the topic of money and how expensive therapies and medicines and treatments and just about everything can be.  I have to say that it’s terrifying to really think about how much money we have spent over the past 7 years on my son…but I know deep in my heart that it’s all worth it.

It wasn’t always like that.  I remember one time my wife wanted us to go to a weekend conference on autism…I threw a HUGE tantrum and basically said, “why do I need to go to a conference where they’re going to talk about autism and remind me that my child isn’t typical and then they’ll try and sell me some magic potion and will try and convince me that this magic elixir is the end-all, be-all for treatment of autism!”

I didn’t want to go, I didn’t want to spend the money, I didn’t want to be around those in a similar situation like mine.

Applied Behavioral Analysis (ABA) is the only scientifically proven therapy to help children on the spectrum…and it’s expensive.

My son takes medication to help his moods and swings…that’s expensive.

There are all sorts of secondary therapies: horse, gymnastics, music, art, water, judo, kung-fu….yeah those are expensive.

As a father I hated spending money on these things…do they really work?  How do I even know they work?  It sure doesn’t SEEM like it’s helping my son.

It’s not like he was coming home and showing me new Kung-Fu moves…or really becoming a polished horseman…or telling me how much he was enjoying these activities.

Ahhh…once again the ugly head of selfishness rears it’s little head.

It’s not about me.  It’s not about what I think or what I want or what I can see or what I can prove.  It’s about my son.  He might not be the next Bruce Lee…but I know he’s getting something out of Kung-Fu…I’ve seen him improve and that little improvement bit-by-bit….is enough to pay for lessons.

You have to remember that progress has to be measured differently from your other “typical” children…it’s not a linear progress…you might never see progress!  You might see little bitty progress and then BOOM…a lot.

Yes…autism is expensive.  Figure out a budget.  Talk to your spouse.  Make sure you don’t spend money where you can’t spend money.  Do your research on activities and therapies and medicines…if you feel it’s worth it and you feel that it will benefit your child…and you have the money…go for it.

Remember…you and your spouse are the family…your child is an addition to your family unit.  If you are causing  your family hardship by spending on things for one child…to the detriment of the others in the family…then you might want to reconsider what you’re spending on and try to cut back a little.

Money isn’t going to cure autism.  While there are many expensive aspects to autism…there are also some free aspects to autism as well.  Go to the park.  Run around the yard.  Embrace your child.  Smile at your child.  Make them know they’re loved.  Hold them to a high standard…when you want them to pay attention to you–make them pay attention to you (even for a few seconds)

It’s not going to benefit your special needs child one bit if you spend all your money and have nothing for them…

Go for 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

A feel good autism story…

You can tell that April is around the corner.  Yes, April is Autism Awareness Month and that’s when all your media outlets pay attention to the world of autism for 30 days.

But recently I’ve been seeing more articles and stories regarding autism so that’s positive.

I ran across a story of a police officer who has befriended a young man who is on the spectrum

It’s a simple but powerful story of how a little act of kindness and taking a little time out of one’s day can make a huge impact.

As our children on the spectrum get older and older and more into the “typical world” both sides need one another.

I mean that we need more stories, more events like this police officer and young man.

We need to expose the “typical world” to the world of autism…they need to see that there’s nothing wrong with our children.  There will be differences but they’re not harmful (mostly) and so there’s nothing to be afraid about when being with a child on the spectrum.

The autism world needs the typical world as well.  We need to have our children around as many typical people as possible.  My 7-year-old son needs to experience what it’s like to be with others who are not on the spectrum.  He needs to learn what’s socially acceptable and not acceptable…the only way he’s going to learn that is from being in that world.

It’s not an Us vs. Them scenario.  If we educate each other about autism and our children, and how they’re smart, happy, funny, playful, sensitive just like everyone else, then maybe in years to come we won’t have issues will people thinking those on the spectrum are not contributing members of society.

Kudos to this police officer for actually taking time to be a part of this young man’s life…he might not know it but he is not only helping the young man but he’s helping many across the country who may soon realize that children on the spectrum are different…but the same.

We need more stories like these!

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