When the going gets tough...

When the going gets tough, the tough get going... This phrase came to mind this eve on yet another brink of disaster, aka tantrum explosion, followed by the complete realization that I have absolutely no control over my son.  As I again sat and cried the tantrum away, I could think of nothing but how much more, how MUCH WORSE, does it have to get before I am no longer able to do it; before I reach my breaking point; before I just totally give up; when does it get better?  I found that the phrase could have two meanings (thanks to google). The first is "When the situation becomes difficult, the strong will work harder to meet the challenge."  Taken another way the phrase could mean, "Those who act tough and proud will vacate a situation when it becomes difficult lest they be proven not as tough as they appear to be."  I find myself torn but yet smack dab in the middle of working harder while still looking for that escape to run as far from the situation that I could run, as fast as I could run it.  Instead I cry and I cry, hoping my tears will wash the autism away, begging God to "fix" my son, imagining a life without autism, without the chaos, without the pain of lost dreams.  As Talon comes off his rage, I visualize the life I wish we had... going to a restaurant to "dine-in", watching the new children's film in theater, or even simpler, being able to board the school bus "normally".  Even the "easy stuff" is becoming total chaos.  Talon no longer sits in a car seat or even a seat in the car for that matter, making it even more of an impossibility to travel.  Oh sure he gets in the car but I wont begin to reveal his location.  So as if that isn't traumatic enough, once we arrive home (because any other locale would be a no-go) he will no longer allow me to assist him into the house.  I then spend the next 20 to 30 minutes either fighting him into the door or using some sort of coercion to get him to walk in willingly.  I'm just so tired of the battle.  Its a constant daily battle from the time he wakes up and refuses to walk out the door to refusing to board the bus until evening comes and we battle again over the craziest little things.  I've had a few people tell me that age 4 was a terrible year due to several transitions and growth, etc. but what is the mother suppose to do?  Nothing will stop Talon when he has his mind set on something... No punishment or discipline changes his behavior.  I guess I just keep waiting and hoping and praying things will change quickly... please God, let them change quickly.  {Sorry this post was more of a "vent session" but when you have no other outlet, you have to use what ya got.}

A little piece of Perspective Pie :)

Wow!!  Its been a very long time since I've blogged, so instead of giving multiple excuses I'm just gonna simply blame it all on SUMMER VACATION!! haha not that I actually got a vacation but since my kids did it pretty much destroyed any chance of me getting "caught up" on anything.  I do have to say our summer has flew by and we've had a pretty good one, but I'm very excited to say as we approach a new school year for Talon, that we have seen ZERO regression despite having ZERO therapy this summer!!!  Why no therapy you ask?  Blame it on a small town, lack of resources, one parent home, financial limitations, time constraints, schedule conflicts and well you get the point.  Anyway, no regression is a very positive step in the right direction and we are very grateful :)

So tonight my story is a little different... Sometimes I think I "think" too much.  I know I worry too much and I'm too over-protective and a tidbit of a control freak, but my thinking has been out of control lately.  Have you ever just had someone on your mind that no matter what you did their face just wouldn't leave your mind?  That's where I'm at tonight.  Today I was fortunate enough to just simply "see" one of the most beautiful little girls I've ever seen in my life.  I wasn't at a pageant or other similar affair, just picking up some lunch, when my glance became an all out overwhelming fixation on this little girl.  Her slick bald head is what initially caught my eye, followed by the immediate assumption of childhood cancer.  As I waited for my food I couldn't help but say a little silent prayer for her, while also noticing the overall intake of the restaurant.  I observed a few patrons who saw and whispered while others saw but pretended it was normal, but what I mostly saw was this mother who sat with her THREE children trying to have a "normal" lunch.  I saw the little girl's brother and sister look at her with no indifference.  I saw the little girl react to her surroundings with confidence and amazement.  And when she stood up, I saw her tremendous struggle just to take a tiny step.  Not once did I see a mom who thought her daughter couldn't make it nor did she flinch when she saw her daughter unable to take another step before she swept her up to carry her in her arms.  My heart just broke. 

So this is where I received my little piece of perspective pie today.  Knowing as a mother just a small idea of emotion, stress, etc. of what that amazing mother must have to endure.  I deal with fear on a daily basis in regard to what situations, behaviors, or reactions I may be dealt regarding Talon.  I can honestly say I never fear that each day may be his last.  Don't get me wrong, any of us can leave this earth at any time regardless of age, illness, or circumstance, but death is not a constant fear of mine.  So as I watched this family, I began to fear for this mother, a complete stranger, because what if... what if her child didn't see tomorrow.  I started to see how selfish I had been when Talon wouldn't cooperate so I could get groceries or he refused to go on a play date and my frustration would overcome me... at least I knew I would be snuggling him in bed that night, and I knew we were not scheduled for multiple procedures or doctors appointments.  Sometimes I think I've focused so much on what's "missing" from our life, that I forget what I have in front of me everyday.  I have a physically healthy, happy, active, rambunctious little boy who loves to cuddle his momma.  I have a beautiful daughter who is a complete social butterfly and even at age 6 advocates for her brother like nothing I have ever seen.  Ultimately I'm too BLESSED to be STRESSED!! :)

I recently watched the movie "Soul Surfer" which is similar to what I'm sharing.  Totally and completely different circumstances but still the same lesson in stepping back and looking at the full picture and gaining a new perspective.  I wish I could say I didn't question God's motives, but just like "Bethany" I have a hard time seeing how this could possibly be God's plan for me and my son.  I guess its normal to question tragedy or hardship as long as it doesn't consume you into a constant state of depression or negativity.  Regardless I know God DOES have a plan for us and its one of prosper and hope and a future.  Perhaps new dreams need to be envisioned or just some refocusing take place because overall I know I was born to handle this and I want to handle it just as God knew I would.  xoxo

Short & Sweet... but Thankful :)

I really don't have too much to say but wanted to take the time to THANK everyone who did ANYTHING during the month of APRIL to promote AUTISM AWARENESS!!  From the ribbons worn, to facebook posts, to joining us during one of the BIGGEST events for AUTISM our community has seen... a HUGE thanks goes out for your love and support. The turnout for the walk exceeded every expectation I ever imagined and my heart was overwhelmed.  As a mother of an autistic son, all we truly want is for others to see what our children are really about.  I want you to see the little boy who laughs and hugs and LOVES his life.  He doesn't know he's different and if we could only live in a world where "others" didn't perceive him as different, we could move so much further without so much of the grief we endure.  These kids are smart and should never NEVER be underestimated!!!  Never talk around them as if they are not there and even though they might not ask, don't ever NOT include them in group activities. (yes that's a double negative, sorry english teachers!!) But again THANK YOU for your support for the month of APRIL!!! but please remember autism doesn't stop for us and we need you EVERYDAY!  WE LOVE YOU!!!!

The Good, the Bad and the Ugly

Well today is Easter, or was, as its almost over.  It has always been a day I looked forward to and enjoyed, not only to give our Savior the much recognition He deserves, but to do it all with loved ones.  I love getting my kids and myself dressed in matching outfits to go to church, decorating their baskets, taking pictures, and just loving my family.  That was until Autism stepped in and reared it's ugly face at every family function or social event. I know my blogging is sporadic and even I don't know when I'll update.  Its usually brought about by news, excitement, or as it seems most, anger.  I never try to hide my emotions about the subject... I HATE Autism.  I hate the hold it has on my baby, I hate the restrictions it places on him, I hate to hear the very word spoken out loud.  My hate for it never leaves my mind or body and today we went head on, face to face, tear for tear, as I fought to keep Talon from hurting himself during one of his recent "rages". 

These rages (so far) appear to have no trigger.  It begins like a raging wind at the start of a bad storm and before you know it, you are spiraling in the death of the tornado with everything in site being destroyed.  I could never express in words how it feels as a mother to have your child physically attack you while you guard his every movement to keep him from hurting himself.  I'm sure you ask how much harm could a 3 (4 next month) year old do to an adult 4x his size, but only the people who experience the rage truly know its power.  My mom could speak volumes about the rage that resulted in him head butting her and knocking out 2 of her front teeth.  By the time the rage is over, I am so physically and emotionally exhausted that I can only sit down and cry myself to a better calm.  This is my overall demeanor tonight as I was never more thankful that Talon was able to fall asleep at his regular bedtime. 

Today's rage began just as the morning service at church was ending.  We visited my mom & dad's church for the Easter holiday and actually had minimal problems during the service.  We had a wonderful prayer for Talon and I was just so thankful that we could make it through an entire service before Autism showed up.  But there at the end, sure enough, there he was, and he was ready to fight.  I cry as I share this with others because its heart wrenching to see your baby have to deal with something he has no clue how to deal with and reliving it never gets easier.  As Talon spiraled out of control, it was as if time moved in slow motion.  We were in this bubble and everyone around us was leaving and laughing and going about their way, but here we were stuck in this battle... again... mommy against Autism.  We eventually made it home and close to 55 minutes later the rage was ending.  This one revealed only a few red marks to Talon, which may or may not bruise, and back and stomach pain to mommy.  I wish I could say mommy defeated Autism this time but that would be untrue, however, Autism definitely did not defeat THIS mommy THIS time or any other time its shown its ugly face.  I can only describe it as a war with constant battles that come and go, but soon enough he has to go for good, and we wont give up until we fight Autism away!! 

I hope my blog doesn't create bad insight as to what Autism is about.  I only want to share EVERY moment, GOOD, BAD, OR UGLY to help others understand and perhaps let those who experience similar matters to know they are NEVER alone.  I love my son more than words could ever describe.  He has brought me more joy and happiness through his smile and laughter than I would have ever thought possible.  He loves with a love that is REAL and TRUE.  When he hugs you and kisses you, its never fake or thoughtless.  He loves his life and he's happy and smart and beautiful.  Together people can make a difference and together we can and WILL see Autism defeated!!     

World Autism Awareness Day!

Of course I have to blog on the most important day for Autism!  World Autism Awareness Day gets the month of April off to a bang, only to be followed by numerous events throughout the world to celebrate April as Autism Awareness Month.  I get so excited and emotional just thinking of all the support taking place this month.  The biggest event for us will be the very FIRST Autism Awareness Walk for Manchester!!!!  It will take place April 29th at 6:30pm and begin at EKU-Manchester Ctr.  We will walk it to Rawlings/Stinson park where hopefully the weather will permit us to watch a movie!!  It may not seem like much, but to a community where guessing that 90% of ppl have no clue what Autism is really about, then its HUGE!!!  I can't thank Jessalynn & Kevin Bowman enough for their advocacy for not only their son, Ethan, but for ALL families who deal with this epidemic. 

It may not seem like it if you are around me but not one day passes that Autism isn't on my mind.  It's not always good thoughts, like thinking of what my son has accomplished or what new "links" scientists have found in hopes to end Autism.  But many times my thoughts are full of bitterness and jealousy, especially when I watch "healthy" children talking and reading and obeying their parents or following their command.  Its almost been a year since Talon was diagnosed with Autism and I not only see the huge change in him but in myself as well.  It would be a lie if I said I didn't struggle with the diagnosis on my son's life.  It would be an even bigger lie if I said I accepted him as the "autistic boy" that he is.  I guess that's the hardest part about Autism.  I don't EVER want to change who Talon is, but in my own selfish regard, he HAS to change to be an overcomer.  It's very contradictory in my explanation so I try to relate it best through the life of Temple Grandin, excuse me, DR. Temple Grandin.  This extraordinary Autistic woman has a story that would bring you to your knees.  I'm not going to go into her life but seriously check it out... just google it... its awesome.  Okay so back to how I relate it to her.  She once said (not quoted) that without Autistic individuals we wouldn't have the world as we know it.  All those that came before us like Einstein, Beethoven, Thomas Edison, Charles Darwin, Van Gogh, and Thomas Jefferson (just to name a few) were all believed to be Autistic!!!!  Look at their accomplishments that changed the way of life forever.  So basically what I'm trying to say is that I don't want Talon to be something he wasn't meant to be.  I know he was given this for a reason and peoples lives will be forever changed for it, but its the -not knowing- part I guess that gets me a little down.  The fear that maybe I'm not doing enough for him or that I'm missing something he's trying to tell me that could help him.  Just typical mommy fears I suppose.  Just another part of "me" that needs work.  But luckily I have a huge support group that never ceases to amaze me and continues to grow!!  I have met some of the strongest most amazing people of faith that I would have probably never met had we not had this one similarity.  Together we will see our children conquer the impossible and give strength and hope to the ones just beginning their journeys.  HAPPY WORLD AUTISM AWARENESS DAY!!!!!!

Light It Up BLUE!!!

So if you are new to our blog you probably don't see a change, but for those who have visited us before you should see a BIG difference... our page is BLUE!!!!  Why? You ask.  In honor of "Light it up Blue" silly! But seriously, APRIL is AUTISM AWARENESS month with the 2nd being WORLD AUTISM DAY!! So help support us by supporting the Light it up Blue event by Autism Speaks.  Its an annual event to help shed light on Autism.  So please on April 1st and 2nd (heck all month if you're super cool) support those who deal with Autism EVERY DAY OF THE YEAR.  We support by wearing BLUE, lighting a BLUE light (perhaps your porch light), donating to an Autistic charity, having a BLUE themed party, or just anything BLUE you can do!  Use your imagination and when someone asks be sure to educate them on what AUTISM is really about.

But wait!!! Do YOU even know what Autism is???  Could you educate someone else if they asked you too?  It's not misbehaved, bad parenting, I need attention kids... it's not mental retardation... it's not CONTAGIOUS and so far it's not "medically" curable. So here is the "official" description...  Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS, Asperger's Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders. Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism. WOW. 

In our home Autism is about routine, chaos, lack of communication and advocacy.  But look deeper and its unconditional, nonjudgmental, pure honest TRUE love.  There is nothing fake about Autism... there is no forced laugh or smile, there is no sarcasm, no mixed signals or "playing nice."  When Talon is happy you will see and hear it.  He wont try to contain it or suppress it from others.  His big grin and loud chuckle will fill any room and he simply doesn't care what others think of him.  He doesn't care if others point at his jumping and "flapping" because he is so happy and so excited that he doesn't want to (nor can he) contain it.  He doesn't see you whispering about his actions or discussing his "issues".  He is a happy kid who loves life.  He gives the tightest most meaningful hugs I have ever received and his slobbery kiss will fix any problem.  He is still unable to communicate verbally but rest assure mommy always knows his needs.  So many people have asked how I know what to do for him or how I knew what he wanted me to do... and honestly I have no idea how to explain it... I just know.    

So yeah, April is a very exciting month for us because I love to spread awareness and I love to share our experiences.  Someone may need your encouragement or better yet, they may REALLY need your hug.  And just a little bit of advice from a mom who knows... DON'T tell families affected by Autism that "everything will be okay".  Honestly it stings... We KNOW everything will be okay because WE wont give up until it is okay.  That doesn't fix it or make the nights easier.  We understand you mean no harm and are only offering support, but instead maybe just tell us you love us or better yet, tell us what an AWESOME kid we have. :)

~LIGHT IT UP BLUE APRIL 1ST AND 2ND~

Autism aint Easy...

Well like everything else in my life, I'm late updating my blog!  I promise to do better... time management is a huge goal of mine, as well as others in my life, lol.  In other news, back to the blog!!  This week I thought I would share some of the more emotional side effects of Autism.  I also ask that those who may stumble upon this blog to please pray for a friend who has recently started her own journey in dealing with the huge heartbreak (and loss, so to speak) of Autism taking her son.  Together we will make it through!!

I don't think I have ever read a more true statement than the foreword from Jenny McCarthy's book, "Louder Than Words".  Written by David Feinberd, MD, it states "When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support.  When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle."  I can't tell you how true a statement this is from my own personal life.  Its almost as though people are afraid to speak Talon's name to me.  Sure we'll talk forever about how my daughter is in cheerleading, dance, gymnastics and made Student of the Month, but I guess since Talon is autistic we should pretend he doesn't exist.  That will surely take the problem away!!Sometimes I want to scream and say "And Talon is GREAT by the way, so glad you asked!!!!"  But instead I bite my tongue and cry about it later.  No one in this entire world wishes Talon was the boy he is suppose to be.  No one would love more to hear their child say "mommy" like it was nothing and take it for granted.  Pretending like it doesn't exist, doesn't make Talon "okay",  it doesn't take away my pain, or my heartache, and it DEFINITELY doesn't make things any easier!

Since Talon's diagnosis I can't report life has gotten much easier, cause trust me Autism ain't easy.  But I can tell you how God has made me stronger.  I've always been a fighter.  I've never just given up and laid down on anything I've faced but this has definitely been my biggest challenge.  I've never cried so much or been so infuriated over something in my life.  Which children do "bring out the crazy" in moms.  I've lost my cool with people on several occasions.  They learn to avoid me or fix it, what can I say.  My son can't talk so I'm not just his voice but his advocate and his slingshot.  The strength I've gained is immeasurable to say the least and I won't stop until Talon is the child God created him to be. 

Perhaps the hardest aspect of Autism that I face myself is the judgment I receive from the ignorant who believe my life IS easy.  The ones who question why I'm not at my daughter's game or performances.  The ones who want to know why I missed their child's birthday party.  Or just the ones who want to monitor my attendance to certain services or events.  So here goes a little "lesson" as to why I'm that "bad mother, friend, etc".  Not that I ever have to explain myself but... perhaps you don't realize that ANYTHING unfamiliar to Talon is gonna be BIG TROUBLE!!  Maybe you don't understand that Talon doesn't respond to commands or rules.  You certainly haven't realized that Talon is non-verbal, which leaves him almost incapable of letting his needs be known.  Could you even begin to imagine how frustrating that is to him???  I'm sure you don't know nor have you witnessed the "meltdown" Talon has from simply driving through the bank drop-offs, or maybe I took a different turn on the way home.  Want us to come for a visit???  I hope you don't mind him rearranging everything in your home and going through some personal items OR having to keep the tv on a certain channel.  A play date? Sure.  As long as you can realize when Talon hits your child, he has no understanding that he has hurt them so forget the sympathy.  Why don't you just take Talon with you, you ask.  Maybe it's because Talon has no constraints in public... he doesn't care if it offends you, hurts you, or disrupts your event.  He doesn't care to fight his way out of your arms and run onto the basketball court, soccer field, or cheer competition.  He simply sees the ball and kids running and he wants to do the same.  So when you judge me for missing my daughter's events, your party, or other occasion, just remember I did it so YOU could enjoy it the way YOU would want it to be.  I am the one who sacrifices seeing my own daughter's accomplishments.  I am the one who lives with the guilt and heartbreak when she asks if I seen her performance and I tell her no.  I am the one who loses the (much needed) socialization with family and friends at your party.  I am the one who gave up the entertainment and will sit home alone so YOU can enjoy the event.  Oh I'm sure you would love to help me.  I've heard that at least a million times.  But now what you need to understand is no matter how much I would LOVE your help, Talon doesn't want it.  Because see, if he doesn't know you then you can forget any offer of help you can send.  And to know Talon is to see him day after day after day after day with total interaction and play.  Otherwise you really don't know him at all and as I said before, he doesn't "want" your help.  So I have kinda gave up the notion that it takes "a village to raise a child".  A child with Autism can't handle that village so therefore his caretaker takes on every demand of that child.  

Autism is so unspoken and every child is so unique that no family can really be compared.  But I promise if you could see past your opinions you could certainly realize why families dealing with autism disappear into their own world... It's not by choice in a sense to hide, but it is your choice to seek and know us.  Go out and find an autistic child to love, trust me, you'll become their whole world!!

Before ending I have to give a big HUGE THANKS and XOXO to the family and friends in my life that have taken the time to know and understand us.  The ones that have forgiven me when I missed important events.  The ones who never question why I'm late because they already know the answer.  The ones that stayed in my home with Talon so I could see my daughter's event.  To those who aren't afraid to ask about Talon and speak his name.  The ones who pray for us nonstop who will see the glory of God one day for such faithfulness.  The ones who bring groceries, etc. because they know how hard it is to get Talon to those places.  The ones with the patience of Job who endure our visits whether it be friendly, a doctor visit, or attempting to have family photos taken.  To the ones that gave up a part of their life to be in our crazy world, we truly LOVE YOU!