Let's learn to see beyond our own glass bubbles. We live in a world with about 7,177,568,766 unique individuals who have as much right to love and respect as you do. Open. Your. Mind.

Beautiful – Part 3


This is the final post documenting the courageous act my student Shayla performed to gain funds and awareness for Shayla before and afterChildhood Cancer.  If you missed them, you can read Part 1  and  Part 2 here for the back story.

Today, Shayla wraps up her commentary about her experience of shaving her head in order to “live life” with people who are going through this for real.  I want to thank her for sharing her experience with us.  I urge you to share her selfless act with as many people as you can by sharing this blog post.  I think it’s important for others to know there are real people in this world who are working to make it a better place, who’s hearts are genuine and souls are kind.

Now let’s hear from Shayla….

I believe the first couple of days as I walked with confidence (not arrogant, but simply comfortable with my new look) people noticed that I was happy with my decision and really supported it.

Yes, I did get the occasional rude question of, “Um but why would you do something so extreme?”  But that question I didn’t mind. Not at all.  The night before I prayed that through this, God would allow opportunities for me to share my faith and the love of Christ, and I was granted the opportunity several times.

Shaving my head wasn’t something to do because I was bored- I wanted to do something that would take me outside of my comfort zone, force me to really lean on God for peace and contentment, allow me to join in on a community/population of people who are often overlooked, and be a part of life with them.  I wanted to be intentional with loving someone because God loves us. I hope and pray that Mary, the little sweet girl that I sponsored with all my donations, will realize that she is truly loved, and has the support of many- not just me, but also the support of the people who supported me so that I could support her.

Although I don’t see myself doing this again anytime soon, I would definitely consider doing it again.  Maybe. Regardless of shaving my head though, I do see myself being an advocate for children’s cancer research and rehabilitation and doing what I can to support St. Baldricks Foundation. They’re doing a good thing there.

How was I blessed through this whole thing? Each time someone asks me why I did it, and I get to tell them, I am blessed.  I am blessed because most people I have had the chance to share my experience with have felt moved enough to either want to change their attitude about life and what we take for granted, reflect on how much we allow ourselves to be defined by things that shouldn’t matter, and because some people are still choosing to be a blessing to my fund and give graciously to the cause and to Mary, the precious little girl I chose to sponsor in this.

Beautiful – Part Two


This is the second post of a three part series about my student Shayla who shaved her head a few weeks ago to raise awareness and funding for childhood cancer.  Be certain to read the first post, if you haven’t already.

Shayla before and after

Putting your love into action … now that’s beautiful!

Here, Shayla describes her experiences the day of the big head-shaving event:

March 15th, the day I actually got my head shaved, I can honestly say I was on a roller coaster ride of emotions – excited, nervous, anxious, scared of what my head shape would be like, worried about if I could pull it off, and curious as to what people would say to me!

To keep the traffic moving, each “shavee” was given a time to be in the chair to have their head shaved. My time was 2:50 p.m. The event was from 10am to 3pm – so this gave my mind lots of time to wonder! 

For the most part, I felt pretty calm and at peace since this is something I had always wanted to do. It wasn’t until the hour and a half before (I know the time because I remember being at a store in Columbus stalling time and glancing at my phone from the several calls/texts from friends and family reminding me, “Today is the big day”) that I began to feel butterflies in my stomach and really feel anxious.

Fast forward to that evening – there was a Fellowship Dinner my parents and I attended for a ministry on campus in which I am involved, and will be working for after graduation. The first few people who had the chance to witness my sudden change were, fortunately for me, a bunch of encouraging Christians who made me really feel comfortable with my decision.

I think that night gave me the confidence I needed from then on.

To be continued in Beautiful – Part 3….

Beautiful – Part 1


I have the distinct honor of working with a most delightful young woman, who is one of the (college) student employees in our department.  Her name is Shayla and she is unintentionally redefining beauty, all by herself. That isn’t her intent, but she’s succeeding at it all the same.  I think every person on the planet would benefit by meeting Shayla, so this will be a three-part series on what Shayla is all about.  If you find that you respect what this lovely lady is doing, I urge you to share this blog post with as many people as possible.

Let’s meet Shayla………..

My name is Shayla Mays, a 5th year at Ohio University. I will be graduating this spring from the Bachelor of Specialized Studies department, with a concentration in Classic World Religion and Social Work. With my faith being a huge part of who I am, I want to show the love of Christ to whomever I come into contact with- making Him known to anyone at any given time without force; moving outside of tradition.
Although I think church is a VERY important and healthy part of a Christian’s life, I have found that sometimes Christians get so caught up in institutionalized religion, that we forget to simply love our brothers and sisters across the world. Not preaching at people, but loving them and doing life “with” them- tearing down the “us vs. them” mentality. With all that being said, I am a strong believer in Jesus Christ and the way he lived has impacted my life the most and provokes me to do things… such as shave my head for a cause.
This Saturday, March 15, 2014, I will be traveling to Columbus, OH to take part in the annual St. Baldrick’s Foundation event. This foundation is a non-profit organization that is responsible for raising over millions of dollars for the sake of childhood cancer research- which is normally hugely underfunded. Foundations such as this are important, seeing as one of the number one causes of death for children between the ages of 1-15 are due to some type of child cancer. So, instead of simply becoming aware of such unfortunate events and only keeping that knowledge in my head, I’ve decided to do something about it by raising money for cures- doing so by SHAVING MY HEAD BALD! Yes, one is correct in the fact that by shaving my head is not saving a life directly. However, I want to do life “with” those who are directly affected by childhood cancer and let them know that they are not alone and people ARE in fact doing what they can to bring attention to this and raise money to find cures or better medications.
I would like to confess that I am NO hero and I am definitely not cutting off all my hair simply for attention to boost my self-esteem. In fact, I have already been told Shayla before and afternot to shave off “my beautiful hair” and that there is no need for me to be that extreme and radical. As I prepare myself for this, I am preparing myself to receive disgusted looks from people (we tend to define beauty based on outward appearance a lot over here in western civilization in case you’ve not noticed), I am preparing to explain myself 8999 billion times (slight exaggeration…maybe) to people I often see, and I am preparing myself for many other let-downs. I have no idea what my head shape is really like- for all I know, I may have an awkward shaped head that’s been hidden by hair for 23 years. I have no clue how my hair will grow back and how long it will take.
All I know is that, at this point in my life, I am not worried about what people think of me in that way and I am done allowing the fear of what others think of me, determine my lifestyle. I am shaving my head because I want to. It will be a very humbling experience and that is what I am looking forward to most.
When all of this is over, however long this process shall be, I hope to understand the feelings of those who have lost their hair due to sickness. I hope this time will also teach me to accept everyone, not for what they look like, but for their character alone.

If you would like to donate to Shayla’s cause and see what she is working toward, click here.

Addiction


I have been thinking a lot about addiction lately.  addiction-photo

The reason I have been thinking about it is that I have come to realize how very addicted to food I am.  I tried to do a ten day juice fast.  I was pleased that I made it seven days.  But I was horrified by how my brain became my own worst enemy.  I was constantly trying to figure out how I could cheat.  How I could sneak a bite of food here or there.  How I could wait until my older son was not around so he wouldn’t stop me (because he was my greatest champion in keeping me on the straight and narrow.)

sneaking food

It finally hit me…Omigosh!  What are you doing?!

I recognized the behaviors I was presenting and I equated them with behaviors of other addicts.  Being sneaky and obsessed with trying to consume whatever is one’s personal vice.  Living in denial and having seriously no control over the urges you are experiencing.

Wikipedia defines addiction like this.  (click on the “this”)

I particularly paid attention to the part that says, “Classic hallmarks of addiction include impaired control over substances or behavior, preoccupation with substance or behavior, continued use despite consequences, and denial.”

This is me.  And I know my trigger food.  It’s cheddar cheese.  I have to cut myself off from it entirely because I have no self-control when it comes to cheddar cheese.  From what I am reading, it apparently gives my brain’s “reward center” a real boost and fulfills emotional and psychological needs, simply from eating the food.

How did this happen?  When did this happen?

I came across this Huffington Post article “Food Addiction is Real“.  Good read, you should check it out.Addiction enters

Food addiction is a real thing.  If I don’t “get clean”, it will kill me in time.

I have a new appreciation for the struggle people go through who are addicted to drugs of any kind.  Illegal, nicotine, alcohol, or whatever.  I urge you…if you are struggling to break free from an addiction which is ruling your life….Do It.  Take whatever steps necessary, and break yourself free from it.  Alcohol? Cigarettes? Legal or Illegal Drugs?  Internet? Pornography? Gaming? Gambling? This is by no means a comprehensive list.

Get Free.  Love yourself more than you love your prison.

Break free of addiction

My prison is food.  Compulsive overeating and addiction to certain foods is where I am struggling.  I will overcome this because a lot of people are counting on me.  I need to be around for a long, long time.  And I need to FEEL GOOD while I’m here.

Where are you struggling?

 

Be honest with yourself.

Love yourself.

Take care of yourself.

Imagine how amazing you will feel when you are free from that which controls you.

Learn to control your own mind…..don’t let it control you.

And if you can’t Win on your own?  Get Help.

You. Are. Worth. It.

 

Morphing


The whole reason I started this blog was to reach out to those who were dealing with their child being diagnosed with an Autism Spectrum Disorder.  I wanted to share our family’s experiences, struggles and successes in the hopes that others might find hope and help and support along their own journeys.  I wanted to educate, advocate and increase the love, awareness, acceptance and understanding between the people of this world.  I wanted to give people a reason to open their hearts…and minds… to new levels of connecting with the people in the world around them.  I wanted to help them to see with new and better eyes.

On some levels, based on the feedback I have received over the past 2+ years, I believe I have achieved what I set out to do.  This makes my heart very happy.

As I have mentioned, as Eli has gotten older, I feel a sense of anonymity is imperative for him.  I don’t feel comfortable sharing his day to day challenges with the world anymore.  He’s come so far in such a short time!  And he’s growing up.  He deserves to continue on his path at his own pace without being in the spotlight.

So as of today, the blog “Eli’s World” has become something more encompassing.  Its focus is changing from one boy to Diversity as a whole.  There will still be autism related posts and sharing, but I will also expand to include much more.

I hope you will continue to learn from the blog, be willing to embrace those around you with new understanding….or at least a willingness to try….of those who’s stories differ so greatly from your own.

Bear with me as I work to transform the site from Eli’s World to Diversify.

Be loving!

A New Year


A Happy New Year to each of you.  I approach 2014 with a renewed sense of hope.  I have seen positive changes in Eli over the past few months.  He’s come so far, and though we still have a ways to go, I can see that he is certainly going to make it.

One thing we have been diligent about is not giving in to Eli when he’s demanding.  Nasty behaviors or attitudes will not get you what you want.  I work in a public service environment where I see on a weekly basis what happens when parents don’t teach their children this very important lesson.  You’ve seen them too, in stores and restaurants.  The loud, obnoxious, rude bully who bellows and expects the world to cave in to them.  I am one of the people dealing with the tantrums, rude behavior and harsh, lashing out language when these people don’t get their way.

And I work with adults.

I have been blessed to witness these things because it made me smart enough to know how to raise my children better.

Any parent should take heed.  Giving in to your child when he is demanding and nasty acting only serves to reinforce this poor behavior.  We all know this.  And it becomes a whole new ball of wax when that child is on the spectrum.  Your child will have enough trouble relating to the world without have poor behaviors reinforced.

No….it will not be easy.  Yes, you’re going to have some very rough times as the meltdowns occur again and again when she doesn’t get her way.  But just like everything else…our kids need TIME.  And consistency.

I’m starting to see very positive changes in Eli.  Does he still lose it once in a while?  Of course!  But he’s learning other, more appropriate behaviors to present instead of melting down.  And he knows I won’t work with him at all if he get’s nasty with me.  He didn’t learn it over night.  We’ve spent several years getting to this point, but he HAS LEARNED that negotiating is a far better tactic than getting ugly.

This knowledge he has gleaned, these life skills he has acquired, will serve him well his whole life!

So as 2014 begins to unfold, check with yourself.  Are you teaching your children to throw a fit in order to get his way?  If so, you need to sit down with him and set some very rigid ground rules.  And then stick to them.  You will be so grateful that you did.

Don’t forget the sibs!


Written originally on March 5, 2012, the topic of this post is still near and dear to my heart.  As hard as things can be on the parents, it’s imperative we always remember how things are affecting the other children in the household.  They cannot and do not understand why things are so different for their sibling on the spectrum than it is for themselves.  Things appear to be unfair.  Things are often stressful.  Sometimes embarrassing and awkward.  It’s so important to make sure the rest of the children are getting the help and support and encouragement they need as well.  This was written nearly two years ago.  Ash is now 16 and one heck of a guy.  He struggles at times.  Other times he’s the most amazing young man.  Patience is a challenge many days, especially as Eli is going into puberty and has developed anger issues.  

Being Mindful of Big Brother’s needs too

Our older son, Ash, is such an amazing kid, and Big Brother Extraordinaire to Eli.

At age 14, Ash is five years older, typically-developing, hilarious & fun, …. an many a person have told me, “Ash has an “Old Soul”.  I totally agree.  By “old soul” I mean that he’s wise beyond his years, he’s gentlemanly, and … I guess I find him to be quite noble in a day and age when you don’t see a lot of nobility displaying itself in people’s actions.

Ash and Eli outside of Bubba Gump Shrimp Co., posing with the Gump Shoes

I’d like to think some of these characteristics are things we’ve helped him to learn by being his parents.  But if I’m downright honest with myself, I have to admit that a lot of it just comes naturally to Ash.  He naturally has a strong sense of right and wrong, a loving, giving heart, and a passion to protect and defend others, especially if he doesn’t feel they can defend themselves.  He has a kindness that just rolls off of him and puts others at ease.

Of course, he makes mistakes like all kids (and many adults!) but I’ve never seen anyone so humbly willing to accept his consequences without much complaint.  I’ve cut short many a “punishment” because he’s accepted it so gracefully and without whining that I end up feeling guilty for making it continue!  He’s far more mature than many of his peers, and he always has been. Even as a young child, he saw the world with older eyes than others children his age.

When I look at our son and really see the person he is, I’m overwhelmed by how intensely proud I am to be Ash’s mother.  I consider it a great blessing and honor that God gave me this boy and I give praise for Ash more than he knows.

I guess that’s why when Ash does struggle with right choices, we’re harder on him than is probably fair. It always catches me by surprise, because it’s so out of character for him!

Today I’m overwhelmed with feelings of guilt and remorse for him. I sometimes forget the fact that he, too, is making a lot of sacrifices when it comes to having a brother who needs special consideration.  I’m reminded that we are not always fair in our expectations of Ash, of how much he has endured in frustration over the years, as well as how much he gives to Eli on a daily basis.

I watched Ash struggle with a situation this weekend in whether or not to share something with Eli.  To me, the answer was quite clear at the time.  Eli pretty much always chooses to share things with Ash, so Ash should do the same thing.  Right?

After much deliberation, Ash made the good choice and did share the item with his brother.  I could tell he felt good about the decision, so it surprised me that, later when I praised him for his decision, his response to me was almost angry.

“I know Eli chooses to share most things with me, Mom, but you know perfectly well that if he decided not to, you wouldn’t make him.  For once…just once…. I wanted something to be just mine and not have to share it.  Maybe that is selfish of me, and yes, I’m glad I did share with him – you’re right, I do feel better that I did – but it’s not fair that I don’t have the right to choose like he does.”

He’s right.  God love him, he is so right.

I instantly felt bad.  I know very well that Ash makes it so easy on us to spend a lot of time focusing on Eli’s needs.  He even helps us and is an extremely valuable part of our team!  He gives so much love and attention to Eli, spending time with him, helping him with the math homework that I can’t help with, allowing Eli to have sleepovers in his room, playing with Eli, laughing and joking with him…. Eli absolutely adores him!  What kid wouldn’t love to have, or benefit from, a big brother or sister spending that much time and attention with/on him?? Ash is so mature about it, and my heart hurts today because we completely take him for granted!

He’s right about us not forcing Eli to share if he doesn’t want to, and quite often it is because Eli is so generous that it’s a rare occasion that he chooses not to…so when that occasion comes, we don’t insist.

Ash is also right about us pretty much forcing him to share nearly everything with his brother, even when he’s against it.  It is our doing this that has caused Ash to increase the number of times that he’s opposed to sharing things.  He’s fighting for his right to choose!  As parents, we’ve made this situation ourselves, and Ash was awesome enough to point it out to me.

The rules are not always the same, and Ash has a right to be resentful about that.  Granted, every kid is different and every kid is not always going to be given the same consideration every single time.  That’s just a part of family life!  But I feel Ash has a very valid point in this matter.  I’m going to have to make myself stop and think things through next time.

I never want Ash to feel that his needs are not as important.  Like I said before, he makes it so easy on us and he’s such an amazing kid….the last thing I want to do is make him feel as if he isn’t as important as his brother.  Nor do I expect him to sacrifice everything for the sake of his brother.  He deserves the right to choose, to have a sense of SELF and propriety about “his stuff”, and his room.  It’s important for Eli, as well, to learn that he’s not always going to get his way in life, something we work on with him in all other aspects of his world, but for some reason – when it comes to Ash — the expectations have been different.  This will change now.  Ash has once again astounded me with his maturity and wisdom.

Be mindful of the needs and feelings of your typically-developing children as well.  If you’ve been blessed with an awesome kid like Ash, it’s even more imperative that you stop to consider them, as they make our lives so much simpler.  Thank you, Ash, for your amazing honesty.  Never stop!  And never think Dad and I don’t care or don’t hear you.  We’re all in this together and we’re going to keep learning new things.  You are such a blessing to Dad and me and to Eli.  Keep on being You!


Originally posted March 1, 2012 on the original blog site, this was one of the most amazing blog posts I have ever written,  only because it was the first time I opened the box of emotions I’d kept tightly sealed for many months after Eli’s diagnosis…and I finally dealt with all of that…”stuff” inside while I was writing it.  I remember I cried through the majority of it.  I had an out-pouring of response for this post.  I share it here again in the hopes that it will help someone else.  (I’m also excited to correct some of the mistakes I found while re-reading it!)

Doubts

Last October, just a few days after we received Eli’s PDD-NOS diagnosis, our family left to go on vacation in the Great Smoky Mountains.  It was a stunning time of year, with the most vibrant leaves, fantastic weather, and it was magnificent to just pull the kids out of school for a week and walk away from all of life’s stressors for some much needed down-time.  We had rented a beautiful cabin in the mountains for the week and we were all so excited just to get away and be together as a family!

Despite our glorious location and my attempts to put the last few weeks behind me, my subconscious wasn’t having any part of it.  Our second or third night there I had a terrible dream.  In the dream our older son Ash was trying to apologize, calm and comfort Eli, who was hysterically screaming and crying.  Ash kept saying, “I’m sorry Buddy, I didn’t mean to!  I didn’t mean to!” But dream-Eli would not be consoled.  He kept screaming, “How could you!?  HOW COULD YOU?!” over and over…. and suddenly…. I realized that Eli was screaming at ME!  Waves of horror washed over me and I woke up with his accusations still ringing in my ear.

How COULD you let them diagnose me with an ASD, Mom?!  I’m in the National Registry now, and this affects my whole life and what if it’s wrong and this will never go away now that it’s been done and are you sure it’s accurate?? YOU LET THEM!!!  HOW COULD YOU?!

That was the end of sleep for that night.  It was around three in the morning and the entire cabin was silent.  I was shaken and about half nauseous….what had I done?!  I had allowed them to slap a LABEL on my child that would never, ever go away!  What had I done to him?  How COULD I have let them ruin the whole rest of his life by calling him “Autistic”?!  What kind of mother was I?

I left our bed and went elsewhere in the cabin to get myself calmed down, so I wouldn’t disturb Ben’s sleep.  I was in utter tears and still couldn’t get dream-Eli’s screams out of my head.  How could you!?

Unless you have been there yourself, it’s very difficult to understand the emotional trauma a parent goes through when you’re told that your beloved child has a problem that you are unable to fix.  I’m sure all parents react differently.  My own mental anguish ran along the lines of guilt, doubt, self-blame, fear, and an overwhelming sense of loss for “future, adult Eli”.  What did I do wrong during my pregnancy that caused this?  Am I actually to blame?  For the longest time, when E was a toddler, I was absolutely certain that it was my inability to breastfeed him that had caused his lack of interest in being held or cuddled, which of course had led to the severe behavior problems he displayed regularly.  After all, I’d been able to breastfeed Ash – look how close we were, how snuggly he’d been as a little guy, and how well adjusted he was now!  A very wise nurse early in our evaluation processes rolled her eyes at me in gentle mocking and said, “You sound like most mothers….trying to blame yourself for this situation.  But I’m gonna tell ya Girl…. YOU. DIDN’T. DO. THIS.”  It was the first time someone had given me permission to believe that, and I’ll never forget it.

A few hours after I’d been horrified awake, I crawled back into bed and sobbed in my husbands arms, told him about the dream and all my fears and doubts about the diagnosis we’d been handed a few days ago, which we’d just accepted without question.  Shouldn’t we have gotten second and third opinions?  Had we totally ruined Eli’s life by allowing them to label him?  What had we done?!!  It was the first time I’d really verbalized anything about all the stuff that had been in my head since we’d received the diagnosis.  I guess it had taken me that long to let it sink in.

You have to understand something about my husband, Ben.  He’s a really calm guy.  He doesn’t really get excited.  His rear-end could be on fire and he might say, “Wow.  It’s a little warm in here.”  He’s my rock, my sounding-board and my voice of reason when I am no longer capable of keeping myself in check.  He said, “Honey…. have you done any reading about PDD-NOS?”  I admitted I really hadn’t…when would I have had time??  We got the evaluation results and then scrambled to get ready to leave town for a week.  There’d been no time for reading, pleasure or otherwise!  Ben advised me to get online and look PDD-NOS up and read.  He assured me he felt confident the diagnosis was right.

That in itself made me feel better, because another thing you need to know about Ben… he is not a sucker.  He doesn’t immediately trust something is as it seems unless you can pretty much prove it to him.  If he was feeling confident about this, that brought me down several levels on the panic-meter!

So I read.  I found several things online that deal with PDD-NOS by name and began to read about the behaviors associated with it.  I began to read and read, and I felt much better, because every description I found sounded like they were describing Eli himself.  I hadn’t ruined my kid’s whole life after all. I also realized, as I sat there on the porch of the cabin, wrapped in a blanket in the rocking chair, absorbing everything I could in the chilly autumn dawn…. I hadn’t “labeled” him.  Instead we have empowered him!

Our son is not his diagnosis.  My child is not defined by his diagnosis!  Our son is Eli! He is smart and hilarious and charming and sweet!  He’s one of the most generous, kind people I’ve ever known, with a loving, giving heart.  He is patient, polite (um….most of the time!), helpful, amazingly tolerant and he has a grin that will light a room!  Yes, he has some eccentricities and some unique challenges (especially in the classroom) that may confuse or frustrate those who do not know him.  However, this diagnosis has given all of us the power to meet those challenges head-on.  How he succeeds and overcomes and meets those challenges…those are the things that will define him.


Originally published February 29, 2012, this was the first post which kicked off this blog.  Originally published at the original site on http://www.blogger.com I changed to http://www.wordpress.com about a year later.  If you are new to this blog or new to this journey….I hope some of it will ring familiar and helpful.  And mostly…hopeful.  

Enjoy!

New to the journey – we’re learning! 2/29/12

 

Since receiving a solid diagnosis for our nine year old son, Eli, in October 2011 of PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified, an Austism Spectrum Disorder) — on top of his previous diagnoses of ADHD, Severe Anxiety, and Tourette Syndrome, I have been flailing around trying to figure out the [answer to] the ultimate question…. What EXACTLY am I supposed to be doing???

 

 There’s an ocean of information out there to access…but in order to find what actually applies to your child, you need some guidance.  We are at least an hour and forty-five minutes away from the the Behavioral Clinic, Autism Center in Westerville Ohio (Columbus) where Eli received his eventual diagnosis last fall.  They have amazing resources, but after traveling back and forth to the Center and Children’s Hospital all last summer during the evaluations, we knew we could not afford to continue the trek.  There just isn’t enough money or sick/vacation time available to utilize their facility.  I sincerely wish we could!

 

 We, of course, made immediate arrangements with the school and we have been extremely blessed with outstanding teachers for Eli’s 4th grade year, as well as a Principal and School counselors, psychologists, etc. who are willing to go above and beyond to help Eli succeed.  His most difficult challenges in the classroom were identified and his 504 Plan was developed around that.  It is such a blessing to have a willing team to work with!!!  I cannot thank them enough!  

 

I also began to search locally, make contact with our local chapter of the Autism Society, talked to a few local contacts…. but I wasn’t really feeling informed and connected at all.  It’s been entirely overwhelming, and I really didn’t know where to turn. 

 

I remember once equating it with being on a rocking ship, while you’re going through all the evaluations.  When the diagnosis comes, they say, “Yep, your son has PDD-NOS! Don’t worry, there are a lot of resources out there!  Hope you can swim!” and then you’re knocked over the side of the ship into this vast sea of information.  “Good Luck!  Let us know if you need anything!!” the professionals all yell from the ship as they wave and drift away.  And then you’re floating, searching for something, anything that applies to you and your child and your family.  Sure, there’s information everywhere!  As vast as every drop of water that makes up the ocean your floating in, but … how does it help OUR FAMILY specifically? 

 

After about 4 months, I stumbled across a man’s blog on the internet about the daily challenges his family works through with their Austistic 13 year old son.  I read and read and read…I couldn’t stop!  I then found another family’s blog about their 8 year old son, and I began to recognize some major similarites between their child and our Eli!  I got so caught up reading their blog the other morning, I nearly made myself late for work! 

 

For the first time in a long, long while, I am finding comfort and hope!  I never tire of the encouragement I feel reading the accounts of their daily lives working with their children, exploring & learning from each new challenge they face as a family, learning to recognize triggers, and techniques to combat sensory overload and help their precious guy thru the tough stuff when their little mind go haywire from their day.  Everything THEY go through enlightens, encourages, and educates ME!  

 

I’ve already learned a few things that I’ll be trying with Eli, and I was astonished to read about one technique that is routinely used with autistic children that Eli himself has already developed as a coping strategy and incorporated it into his daily morning routine, and none of us even realized it!  What a clever boy he is! 

 

In turn, here I am creating my own blog.  Maybe it will help someone else at the beginning of their journey.  Maybe no one else will ever read it, and it will just be my outlet, my documentation of E’s progress… because it’s really easy to forget just how far he’s already come! 

 

So here is our journey through Eli’s World …

 

 

 

 

 

 

 

 


We have been here before.  I’ve been mentally unable to write for the past few months.  I’m sure you’ve noticed.  The once-a-day posts have fallen to once a week…then once a month.  I am unsure of where to go from here.

My boy is at an age where now there are girls of interest.  In less than a year he will be changing schools and starting at Middle School (Jr. High).  Things I once talked about openly suddenly seem as if they may be damaging to him somehow.  While I seek to advocate and educate the masses through this blog, my first and foremost priority must be Eli.  And that leaves me with difficult choices, which I have mentioned before.

It leaves this blog with an uncertain future.

Spending time writing has been the best therapy I can imagine.  It helps me to wrap my head around things I never thought I would be able … let alone HAVE to…understand.  It’s brought me into friendships I never would have known otherwise, and for that I am grateful.

Eli likes the blog, but he also doesn’t believe that anyone would ever use it against him or make fun of him.  I don’t share his faith in humanity unfortunately.  I’m old enough to know that people – especially children – can be exceptionally cruel.

While it remains important to me to educate and advocate, I find that focusing my attention and time on helping Eli to ‘SELF-advocate’ is far more important…and beneficial.  Time once spent on reaching out to others through these pages is now spent face to face and I think it’s been a good switch.

There’s a girlfriend now….sort of.  If only seeing each other at school and having 99% of your phone calls go unanswered can be called “dating”…. then yeah, there’s a girlfriend.  He ran for student council president this year.  (didn’t win, but he ran!)  He’s considering going out for yearbook staff.  That’s AWESOME.  He’s not suffering in the friend department at all!  He’s writing a screen play.  Sure I don’t really like that it’s about a serial killer, but hey…he’s exercising his creative talents and I’ll be darned if I’ll dampen them.  After all, he might be the next Steven King or George Romero!  Who am I to hinder that!?!?

So while I am not ending this blog, I felt I should at least explain to you why the writing has fallen away.  I owe you that, because you have been my ear-to-hear for nearly two years now! You have been the support and the comfort and the ones who have told me that you react differently to some situations now, simply because you have read the blog, opened your hearts and been willing to be a little more tolerant of your fellow humans.  Because you never know when that “weird guy” or the screaming child might actually be on the spectrum.  YOU are the ones who have inspired me and made me so very proud because you have been willing to grow and learn and understand.  I am SO grateful to you and you are the reason I have continued writing this long!  Therefore I can’t bring myself to leave the blog or Eli’s World Facebook Page entirely behind.  It’s still important!  YOU make it important!  I write it because of YOU.  And I’m grateful to you all.  There are still so many people to reach!  But the nature of the blog is going to change.

I just don’t know in what way yet.

Until I figure it out, I am planning to do some ‘throwbacks’ and re-post the original posts from the original blog site. Maybe it will give hope to a whole new set of readers who are just now entering into this journey.  And I think it will be a very excellent reminder to me of just HOW FAR we really have come!

So as we end 2013, I will try to find a way to keep the blog alive without sacrificing Eli in the process.  Because he truly is amazing and I don’t ever want to be responsible for damaging that.

Bless each of you.

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