"Waiting List"

I find myself in deep thought, conversation, or some stage of planning our son's treatment for Autism so much so that it is hard to remember that there is anything else going on in my household and that is just not the truth.

This week will represent some major progress we have made on the front of creating a supportive environment for our son while adding the right resources to assist in our plan to get him on track for public schooling in 22 months.

One of the steps we have taken has met us with a challenge that we did not anticipate thus rendering some of our progress null and void. In our efforts to better understand what types of specialty programs exist in the field of ABA therapy which would be one of the major steps to our success with our son we have found that the abundance of programs in our area of Houston Texas to be very satisfactory from the outside looking in but once you get to talking to these programs the ugly truth rears its head, stares you in the eye with compassion, and asks you to kindly join the "Waiting List".

Okay now wait a minute.

So let's say money was not an issue (it is but for this case let's say it's not) , and you're telling me that you can provide everything my child needs to be more successful in his treatment prior to beginning school and you have a proven track record of this being done but unfortunately he may have to wait 4-6 months to begin your services.

Really,.........no really.

And you say that you are spread to thin or just don't feel comfortable in providing services to a larger group of children with needs but based on your waiting list and the waiting list of all the other providers in town you just can't see a way to make it happen......oh really.

Insistent on not taking no for an answer I am on a mission and will solve this problem, period. Not just for our own child but for the parents who have yet to venture down this path I cannot sleep at night knowing that we are being set aside to wait on something that early intervention has clearly proven to have a solid success rate and that is just not going to work for us...and for anyone else!

To be continued........

" Is Broken "

Been a few days since my last post which makes the title so much more appropriate.

The new phrase in our house as of recent "is broken" refers to everything, my wife and I feel broken, a number of our things have been broken, and it seems as though our little man feels that breaking everything is sight as his new forte.

Yesterday it was our digital camera, today a crafted ceramic bowl holding flowers that is an important part of our living room. The list of things broken is getting way to long from toys to torn up pictures, coloring and ripping up books and now even things at his school that belong to someone else "IS BROKEN".  The receiver of various toys and cups and food to the back of the head while driving and anything else he can get his hands on is sometimes a bit dangerous. I can only imagine as you're reading this that you have to be asking yourself how do these parents let this happen and to be honest we don't.  Unfortunately a part of our son's unique case is that he has what doctors refer to as rapid outbursts with no emotional attachment which means he shows no verbal or non-verbal signs of an oncoming attack, and even while in the middle of an episode he has been known to show no signs of anger or anxiety and even laughs or smiles in the midst of throwing something at your face at close range. 


We used to get a heads up before an episode of destruction thanks to our friends at Thomas the Train who invented the song "accidents happen" to which every train on the show gets in a wreck or crashes, we knew as soon as we heard the song begin to exit his mouth that it was about to go down and we could get prepared but he has since left the world of Thomas and our saving grace of an alarm bell that is "accidents happen" is no longer there to help us in tough times. 

As we are learning this is some form of communication but a form that is starting to wear a bit on the nerves of his loved ones. There is something about watching your child tear things apart with no concern for safety or value that is disheartening but something that is a part of this battle we have chosen to take on saving one broken item at a time.

Corking a Volcano

I never knew I would have to keenly pick every word in a communication, or drive a certain direction every time we get in the car, or only go out the garage door when no one is looking so as not to ensue a major meltdown but in our world it seems to be the day to day normalcy.

The diagnoses of our son is only validation for the way we have been living and the activities we participate in everyday to manage his emotional well being. The understanding that our son is incredibly intelligent, he actually does listen to every single word we say whether he interacts or responds, and he knows every single route to his favorite places especially the toy store so the term "back seat driver" rings with certainty in our car but I never knew I would be the one having commands barked out at me from a very insistent 3 year old.

One word can change a whole day, one wrong turn and a car turns into a battlefield, and a missed non verbal communication could lead to a long day of uncomfortableness for our little guy. That last one is very important and I am only now learning to pay much more attention to these non verbal cues than I had before. See our son talks in "echo" mode which means a large majority of his verbal communication is actually the regurgitation of something he has heard, sometimes good and sometimes very bad.

My son has been asking me all week if I am feeling well by saying in a very caring and compassionate way    "are you okay". I always answer kindly and go on with what I am doing.....wrong move Dad! My son was actually telling me that he didn't feel well and the only way he knew how was by saying what everyone asks him if they think something is wrong "are you okay", so what I thought was a sweet little guy worried about my well being was really an uncomfortable little camper that needed me to help him feel better.

Details, details, details........is the only way you cork a Volcano!

Autism never knew about Facebook

Autism is a mountain, you're standing at the bottom knowing that you must get to the top and each task you perform to integrate this new found friend into your life is one step up the Mountain.

Step one. Make sure you're on the right mountain, while I would normally say to first plan and prepare prior to getting to the Mountain in this particular instance you get no chance to prepare.

Step two. Map out the steps to the top and make a fair forecast of how long it should take. What therapies will you consider, how long do they take to make an impact, who will provide them, how will they be paid for, and who is responsible for measuring effectiveness.

Feeling more confident.

Step three. Tell someone.........UGH........now I remember why I entitled it "Autism never knew about Facebook". In our new world of hourly status updates, friends lists including spouses, parents, children, grandparents, extended family, old schoolmates, old neighborhood buddies, ex girlfriends and boyfriends, coworkers, previous coworkers.......is it starting to sink in.....one click of the mouse and chances are the math will work out. A small group in total shock and a small group skipping that message today but the large majority are going to act sympathetic with the best of intentions.  We know they just don't know and we appreciate the reply that we are probably getting from the carpool line after school, the bleachers of billy's baseball practice or sally's birthday party and just when you want it to end you get the slew of "I know someone who is impacted by this affliction" replies that provide little to no help at all. If you try and go stealth before long it will be revealed via the magic "like" button to which you would have clicked for "Autism Speaks" or "Walk for Autism" and that one click your out to the world by pure assumption. Over a year ago I wouldn't have noticed but now I would never miss it like that blue 240Z. What makes it all worth it though is some really good people in my friends list that are in the same situation my family is in and we have reached out to share our stories. How did I know that one click would open up a new group of support resources, that the Autism community as a whole would embrace us and send us tips and hints daily, that we could communicate with our child's doctors and therapists both in and out of our personal and professional lives. Being initially concerned with how it would be received I would never hesitate to assure parents of autistic children to use Facebook as a fantastic tool and outlet for their family as it has for ours.

Step four.........to be continued!

"Can't make me be".......

"This was a big mistake buddy, A big mistake"

You know you never thought anyone else had a blue 240Z until you got one and all of a sudden it seemed that everyone on the block now drives a 240Z and most of them blue, yeah I went old school with the Datsun example but I am feeling old lately no matter it still rings true, we are all super sensitive to the things close to our lives.

Well the exact same thing seems to be happening regarding our first dip into the deep end of the pool that is Autism, what we once had denied or not noticed in others or our own son has become keen to our sixth sense, everything Autism...Autism toys, Autism schools, Autism Doctors...Therapists...on and on and on, my friend has a friend, our friend has a son, my cousin knew a kid everyone on earth knows someone right...if you know me then you will appreciate that I will be the first to admit I thought I knew everything but since our diagnoses I have never been so humbled as I am now to how life is for others that live with differences from you and I. That crazy screaming child at the store or restaurant that would make your hair stand on end, yeah that's our son and guess what he can't help it. In a short amount of time I have found my wife and I offering consoling to others in these tough situations only to be greeted with a warm thank you and a sigh of relief that they are not alone......and to be clear not that we have determined their child to be like ours but more so that we understand how difficult a child can be in public and how quickly our society is to judge people that act outside of the norm.

So with snacks in hand and the DVR ready to play we were excited to see the episode on MTV tonight with Jenks while living with the Autistic 20 year old from New Jersey which brought to light that this unfortunate disorder is real, very real, and Chad is a beautiful reason for everyone to be inspired not ashamed of or disrespectful in any way.

I got a lot from it, 21 minutes of TV that I don't mind saying I watched, and certainly some lessons learned of much more value than I had intended to gain from a show on MTV.

http://www.mtv.com/videos/world-of-jenks-ep-2-cant-make-me-be/1647734/playlist.jhtml

Chick-Fil-A......Not such a good idea dear!

Who created this place...no really it's as though a wrinkle in the space and time continuum has allowed these little boxes of social evil to wreak havoc on suburban street corners across the nation. While you may think I am about to plunder down the road of employment discrimination that seems very viable at these establishments filled with mostly Caucasian customer service super robots it is more about the customer demographic and a funny experience than anything else.

Now don't get me wrong I love the food there and maybe more than I should based on my recent waistline measurements that go hand in hand with the amount of stress any family in our circumstances is bound to endure so don't feel bad for an extra cookie with dinner if you catch my drift.

Back to the rant......

This will be fair warning to other families in our situation, please DO NOT GO TO CHICK-FIL-A to discuss the feedback from your child's autism evaluations. In an instant you are bound to be overwhelmed by the amount of suburban housewives with their socially perfect multi-gender brood of children dressed in the coolest new fads, football jerseys, cell phones in tote, every one of them conducting themselves with manners just north of any toddler in a tiara.

Not until this moment had it all meant anything.......

All the hopes of him "growing out of it" or this "being a phase" and those desires to attend his friends birthday parties without the fire alarm being tripped or another child leaving with teeth marks in his arm all dashed in a few bites of your chicken sandwich. All of a sudden the imaginary feeling of things being "normal" sways in your stomach, a cute little boy pops his head over the booth beside you and says "Hello" while sneaking in a cute little smile and right then....right that moment....you are aware that your little boy will not be the one in the booth next to anyone saying a polite "Hello",nope in our case you best duck if you are anywhere within this little guys left armed throw because anything not bolted down is about to go flying.

So as I drive by the Chick-Fil-A in our neighborhood from now on I will hear in my head "Not such a good idea dear" in my wife's lovely voice reminding me that when your whole life changes sometimes the things that used to be "normal" are now foreign and things foreign like the alphabet you just overheard your child start to recite in Spanish when you have no idea even where or how he learned this new language will be the things you grow to cherish.

Welcome To our Blog.....Evans Story of Autism "It Doesn't Hurt"

On 9/8/10 my wife and I were forced to hear those words every parent hopes never come from the Doctors mouth, and while without hesitation we took this self driven journey of questions and concerns little did we know what we had signed up for and I am guessing we are far from the first or last set of parents who have had to share this very difficult moment in the lives of being parents.

"Your son Evan is Autistic"

The feelings rush through your whole body like being struck by lightening, all the countless hours in the past 30 days overtaken by anxiety, stress, pacing in circles, pillaging all the old baby pictures, wondering how or when or how or when ....or how or when.......you know that feeling when tears jump right out of your eyes with no chance of being held back, a flow of feelings that begins at your stomach and flushes your face red, that sound you make when you mix words with a deep cry as if howling in grief.....yeah that was all happening inside my body but being the "strong on the outside" parents that we are we were able to control our outbreak or at least we thought we had, back to that in a moment. We immediately gathered our thoughts, asked some thoughtful questions, and proved to ourselves that we are very calm in an emergency because I know I was in shock as if hit by a bus. All this happening inside of you while  the doctors praised our reaction and embraced our emotions, welcomed us to their family, letting us know we aren't alone even though that is all I remember feeling at that moment.

I had mentioned to my father who is my best friend and sounding board in a discussion we shared the next day that I felt as though I had been in a fight, aches and pains all over, head in a cloud. It took days to let it all digest, to have some clarity, some relief, some hope, and as I stated earlier the OUTBREAK finally came between my wife and I, a huge mess of words, blame, power and control or lack thereof in any case it happened and you can expect to be overcome with feelings of guilt, resentment, queasy, reinforcing that now we feel as prepared as anyone would be when they are just informed that their beautiful bouncing baby 3 year old boy is not the same as his peers, a unique set of mental processes differentiating the "normal" toddler from a child with Autism and while not a bad stigma being among some of the most highly regarded scientists and mathematicians such as Einstein but to a daycare in suburbia a potential tattoo of lifelong discrimination.





My wife and I have coined a term in our research and support for each other in this time of transition, it is the basis for my writings and my patience regarding the care and support of my son.

"It doesn't hurt"

Not uncommon in this group of children is our son Evans uncanny ability to make anyone laugh at any situation at any time, a recent trip to the grocery store to get flowers for mom I was blessed with one of our sons new talking points "poop", no compulsive obsession type activity just good hearted "echo" communication at its finest. Our son yet to be potty trained does like to participate verbally in diaper changing beginning with the hunt of his mother or I to do a "poop check", upon confirmation we proceed to the changing process which is always met with a term we used in front of him as a baby "WHOA STINKY STINKY" would come from my wife or my mouth, he would laugh, and on with the day right.....wrong. Last week standing in line behind a few others at the grocery self checkout my son exclaims very loudly "DADDY....DADDY.....you need to do a poop check whoa you stinky stinky" I smile at the other patrons and mention to my son "did you poop baby" and he yells back at me "NO DADDY YOU POOP AND YOU STINKY STINKY" as I laugh at his insistence and funny facial expressions painting me as a suspect in an unraveling mystery while pointing out to our fellow shoppers that I am in no need of a new diaper.


We shared that moment.

But unlike a "normal" child of his age who may go home and tell his mommy or siblings the story of him and Daddy a child like Evan is not able to process what had happened at all with no recollection of the incident just minutes later.....does it make it any less funny, no not at all but it lets you know that life is not the same for us now. You know what though, it doesn't hurt Evan, he feels nothing but love, laughter, and enjoyment from every one that surrounds him and that is why it is so important for my wife and I to remember everyday for Evan "It Doesn't Hurt" nor will we allow it too!

This is my mini coming out party, go me, but I intend to share the daily shenanigans of the Murphys, this crazy cute boy Evan and our wild adventures of sharing the life of Autism through a parents set of eyes.

Matthew R Murphy