Saturday, December 15, 2012

I Hope Heaven is For Real.

Dear James,

Jamieson Matthew that is.  I know during your life we had our ups and our downs.  You were awful to me, then the best big brother a girl could hope for and then I lost you forever to heroine.  I feel like I mourned your death far earlier than you actually died, because once the drugs took over you weren't my James anymore.  I had to seperate myself to keep my sanity and I couldn't participate in enabling your addiction any longer.  My main effort had to be for your children and that became what was important-their safety and well-being.

I'm sure your aware that The Stin calls me Mom now and The Don is Dad.  I hope you know that we took him because we love him and we raise him as if he is our own. You will always be his biological father, but we have become his parents.  I promise to do my best to help him become the amazing man I know he can be.  I'm sorry that you couldn't know about the adoption, but it just wasn't safe and his safety was all we could worry about.  I hope you are at peace with the situation and can look over this family I have created, the way you used to look out for me when I was younger and you were so very protective.

I know you were a good man who got involved in bad things.  I think your poor choices are the ones that are forgiven, I know you hated those demons so badly.  Because of this, I know you are in heaven. I just do.

I have had an urge to write you ever since the tragedy in Connecticut.  It has touched this nation in a way that is unexplainable. You know, and I'm sure you were there ushering those children to safety and wrapping them in light.  But here is the thing.  I don't know what I believe exactly, but I do believe that you are with me, so here are my thoughts...if you could sneak on down to pergutory, or where ever that Monster has gone, and kick his ass on behalf of every parent in the world who was affected by this-that would be fantastic. You can also throw an extra kick in there for the negative light he has brought onto Aspergers Syndrome. I feel pretty confidant that God will forgive me this request and turn an eye if you need to sneak out of heaven for a minute to give this guy a piece of the Jamie I remember so well, the one who didn't allow his little sister to be hurt by any guy that wasn't going to treat me right.  Muster up that Jamie, the one I miss so much and let this monster face that wrath first.

Give kisses to Nanie and Ashley and baby Steven from me.  I miss you all so very much.



Monday, October 8, 2012

One Flew Over the Corkstin's Nest

As we continue learning and adjusting our parenting style to better accommodate The Stin, these little pop-ups occur that paint a beautiful, hilarious and frustrating picture of his brain in action.  This post is not written to poke fun or make light of any diagnosis or situations that touch so many people.  This is simply written as a tribute to the bumps we encounter on our road with a son who takes the long way to get to the wrong place essentially, and how we back it up and reroute his trip.

So The Stin is in middle school and I felt like I should touch base with some of his teachers to kinda let them know about his diagnosis and also help them understand what might be tough for him with the transition...particularly the teacher's he had received detentions from. Preparation is a tough one for him, planning ahead, thinking about consequences, setting goals too far off-that he struggles with, he is very much a here and now kid. 

I felt like I should give them a heads up, because I wouldn't want them to think he is being lazy or defiant if he continues to forget his books, and I also wanted them to know to keep me in the loop so we can work on his school routine, so he gets into a good routine and not a bad one...key. Plus I wanted to also provide my support for the detentions, he needs consequences, even if they don't really work, his diagnosis is not an excuse for incorrect behavior.  It is only an excuse to work harder.

I particularly wanted to speak to his Language Arts teacher regarding future book reports and extended response tests.  We received The Stins lexical number and he's reading at an 11/12th grade level, however, trying to get him to explain the book is a whole other situation.  He retains, because he can answer about any specific (and by specific I mean multiple choice) question correctly, but once you get into broader thinking that might contain feelings or why the author did this or why don't you think he did that-BAM, he falls apart.  If you ask him to summarize the book for you, he may repeat, almost verbatim, an entire page but that doesn't necessarily mean it explains the book-it most likely is a part he really enjoyed and therefore he will share that information with you.  It's tough and worrisome as he enters 6th grade and I wanted to be proactive with his teachers and open up the lines of communication so I can do whatever I need to help them and him.

So after a little phone tag we finally touch base.  He was in his second week of school and it was a Monday when she called.  She is extremely nice, which is always reassuring, I tell her about The Stin and where my concerns lay and she informs me that summarizing is a struggle at this age for many kids so she's totally prepared to be dedicating a lot of time to working on that.  She also thanks me for the heads up and then mentions that "It makes so much more sense now."  Hmmmmm, what makes more sense?  Well she then proceeds with this story:

On Friday she did a little following directions exercise, giving the class note cards and having them write info on them for her files.  She then instructed them to flip the card over and write something about themselves that they would like to share with her....nothing too personal, just an interesting fact.  Easy enough.  Well as she looked over the cards that weekend and got to The Stin's she flipped it over to read: "I'm Mentally Ill"

Yup, you read that right.  I remember saying "Oh Myyyyyyyyy" as I sighed heavily and threw my head back in disbelief.  But, it did make sense.  As I posted before, we never named the diagnosis when we talked to The Stin.  We used a superpower analogy and basically said his brain was wired differently than most kids...Brain Wired Differently-there it was.  And this is how The Stin thinks.  Let me take you for a ride down The Stin Avenue, be prepared, it's long and takes a lot of wrong turns and as you can see from above, usually finishes in the wrong place..
Brain-well his brain deals with him mentally, since your mental abilities come from your brain. Wired differently means it's broken, but you can't break your brain so it must be sick or something and another word for sickness is being ill and he's heard of being mentally ill before, that is definitely a word he's heard somewhere so it must be the right conclusion that since his brain is wired differently, he is obviously mentally ill. And it is also important to share that with his Language Arts teacher, because saying he plays goalie for his soccer team just doesn't seem appropriate.

Thankfully she is great and after recapping our explanation she really understood where he was coming from and also got a little insight into how his brain works.  But after hanging up, I immediately had to go into damage control.  First I very lightly asked him about the note card and what he shared, and he immediately knew he ended up in the wrong place with that statement.  All I could do was confirm that he was very wrong and by no means was he mentally ill.  I also had to confirm that he hadn't told any of his friends this information, which he assured me he hadn't PHEW!  Then we went into rerouting, which is really just explaining what mental illness is, how he does not fall into that category, reiterating what his diagnosis is and then reminding him that he can't come to conclusions with words he doesn't fully understand.  I swear, if I could use the saying about, "You know what happens when you ASS-U-ME?" I would say it every day to him.  His assumptions are what cause him the most difficulty and he is notorious for making huge assumptions.

But we got that cleared up, for now. His brain is a labyrinth and his paths are never the same in direction, but usually always the same in outcome. I wouldn't worry so much about his long, winding journey, if he was landing in the right spot, but when he finds himself lost in a not-so-good place, that's when I feel like I need to be stepping in and helping to redirect.  The problem is I can't just Google map the directions, and sometimes I might not know the right way either.  So The Stin and I are working on our cartographer skills together and hopefully we can create a map that he can navigate, I don't care how many twists and turns it has, as long as it ultimately leads him to where he needs to go which I hope is also where he wants to be... in the right place, a good place.


Thursday, September 6, 2012

You Kinda Have a Super Power...

For those who have read my blog, you are probably aware that The Stin was recently diagnosed with Asperger's Syndrome.  Not a huge shock, but a diagnosis none the less. 

It's a tricky diagnosis to navigate and he is at an age that makes it even trickier.  To tell or not to tell?  That was the serious question that The Don and I struggled with for months.  We looked to friends, professionals and books for advice and pretty much got different answers all around.  So what to do?

Well being that The Stin was aware we went to a doctor and being at such a high-functioning level, I felt like we needed to tell him.  Mainly it came down to The Stin is a "rule boy" subtype, he follows rules to a "T" set by people he sees as authorities.  We are in a tricky place because he does look at us as authorities of the home, but say with school, his teachers overrule me.  If I'm helping him with homework and go against something his teacher said-he's not having it, doesn't believe it and will argue with me about it.  Soooooo in this situation, my thought was that the doctor is going to be the authority on a diagnosis, so if we tell him that he did in fact get diagnosed, then we can refer to the doctor and the diagnosis when he is being exceptionally Aspy-ish. As long as I reference the doctor, he should be more inclined to take any advice I might be giving him.

Even though I was pretty confidant in this decision, we still put it off and honestly, didn't know what in the world we were going to say. We tried to figure it out and jot down notes, but this was a hard script to write. We knew we didn't want to use the name Asperger's, A.) It's a weird/funny name and B.) I didn't want to put a label on him.  He is first and foremost The Stin and I didn't want to make him feel different.  I also didn't want to give him a crutch or excuse...the cartoon Arthur did an episode on Asperger's which The Stin watched with The Ster, the problem is it dealt with trait's that The Stin doesn't display as much.  Here is the thing with The Stin, that's his reference point-that's his black and white now, so he would have a really hard time accepting the name or could possibly adjust his traits to fit what was shown on the cartoon-there is no gray with him. So with all that considered, our decision being made, no real reference on how to do this,The Don and I did what we do, took each other's hand, asked Justin to come out back so we could talk, sat down with him, I took the lead and we just spoke the words we felt he needed to hear and deserved to hear.

We reminded him of the appointment, which I had prepped him as a doctor that was going to see if she could help us understand why he has a hard time with people's names, and understanding jokes and talking with his friends at lunch.  So after a quick reminder of why we went-which he did remember, we confirmed that she did, in fact agree that these things are and will continue to be hard for him. We told him there was a diagnosis, but the name wasn't important, all we need to focus on is that we, as a family, are all going to have to work harder at learning how to make those situations easier. The Don and I will work hard to be more patient and he will need to continue to work on his socializing skills and trust that we are giving him advice that will help with friendships.

We tried to be slightly "clinical" if you want to call it that and described the diagnosis as basically his brain being wired a little differently, which is why things that come naturally to most kids, like remembering names or getting jokes, are going to be harder for him.  With that being said we also made sure to tell him that he might find there are also some things that come really really easy to him, that most of his friends might find difficult.  The Don and I have always referred to it as the "vacuum cleaner," we need to find The Stins "vacuum cleaner."  Up until now it has been Luigi from Super Mario Bros., and this isn't just a boy liking Luigi, this is an 11-year-old that can identify the exact PMS color for the green needed to correctly color Luigi's hat.  

We told him that we will all work at this together and that even though it might be harder for him with the names and friend stuff, it is still important.  We focused on how he does really good with rules and routines, so we can use that to help make the tough stuff easier, if we can make certain things rules, he is more likely to "follow" them.  We also talked about his "vacuum cleaner," and how we want to know if there is anything he finds really interesting and would like to learn more about so we could provide him with additional information and support. We have slowly watched him be more intrigued by airplanes and science, so we are hoping that Luigi will level out and his focus will transfer to the next area of interest.

As he looked at us, nodding and giving his very common, "OK" confirmation, I worried we weren't drilling any holes in our Corkstin...just floating along. Then The Don took another approach.

"Bud, you kinda have a superpower!  We just have to figure out what it is and use it for the forces of good."

Well, there it was...could you do any better than that?  Totally at his level, on cue with what he likes and instilling a sense of confidence and pride with this diagnosis...and The Stin smiled. I think some water might have gotten in.  

Instead of the usual "OK" his response was: "I've always understood that something was different, but now I understand."

So there it is.  I couldn't ask for much more that that. I have in fact referenced this talk and the diagnosis since then and I do think it has helped.  It allows me to point out specific behavior and reference a doctor and then we work on a solution to help make that behavior better...and when I say behavior I really mean habits or routines, because that is The Stins struggle, outside the social stuff, breaks in his routine really throw him for a loop. So we write more things down and make on the strengths we know/have right now and hope that we are slowly instilling some ability to apply these tools on his own, in situations outside the home.

Every day brings a new adventure for me and The Stin or should I say: Rule Boy-follower of the laws set before him. Our current mission is to defeat the evils of middle school... or just work on remembering the correct books for class.  Maybe we'll keep saving the world on the to do list for now. 

One thing at a time.

Tuesday, August 28, 2012

A Grounded Dreamer...Oximoron?

Nope, just The Don.

And as my talented hubby embarks on making one of his dreams come true, I decided to give him some very well-deseverd kudos.  He is exactly what the title says...a grounded dreamer.  He is a man that has had many ambitions and dreams, since before I ever met him.  Dreamers are attractive, and those who chase their dreams are sexy, but one who can realize that their dream isn't exactly what they thought and can change course-that's The Don.

Some people might frown upon this type of thinking and say that you gave up on your dream, but when your dealing with a creative soul, I think realizing that your passion is with a different creative outlet is admirable.  Not everyone wants or has to struggle for what they love and if you give it a go and decide it isn't worth it, then what's wrong with that? That's not necessarily giving up on your dream, it might just be that maybe this particular dream isn't the one you're meant to chase.  That's what happened with The Don, he didn't give up he just changed direction towards his true dream, and the one worth chasing. So chase he has, up, down and around the bend. It's been an elusive catch, one that has teased and tormented, but The Don has taken charge of his path and that little bugger is within our grasp....finally.

I would like to think that I have contributed to the "grounded" part a tiny bit.  Not in an unsupportive or "ball-and-chain" sense, I have always supported The Don, so much so that I moved to LA with him to pursue his first passion: directing and films.  I would, instead, like to think of my contribution as kind of like being his personal compass-I'm always pointing North for him. When he goes into overdrive or gets lost going West then East then Southwest, I try to be the steady that brings him back to North. Not tying him down, just helping to guide and keep him focused, because The Don is first and foremost a dreamer but that grounded sense has him frequently checking his compass to make sure he is going in the right direction and still on path.

When we moved to LA, I thought this was it.  I believe in The Don wholeheartedly and was quite confidant that he would be successful-he is a driven and talented man.  But the entertainment industry is tricky and LA is a whole different world. Some love it, I had a very hard time. I was an outsider looking in, so I dabbled on the inside with a production company on the Paramount Studios Lot, and I saw a lot of things that were not ok with me. I know there are a lot of good people in the industry, but there are a lot of shady folks too and The Don is not shady, so in my observations, he was at a disadvantage.  There are some tactics taken by people trying to break into films and directing, and they were things that The Don would not do, which put him at another huge disadvantage. Family issues and my dislike for LA, put me on a path to come back to Ohio.  I wasn't going to give him an ultimatum, but I had to make choices for me and we weren't even engaged yet.  Thankfully, The Don decided to come with me-but that didn't mean he was giving up on this dream.  He just decided that if he had to direct his own film on his own time and dime, why not just do it back in Ohio?

So that's what he did.  We moved to Cleveland and he teamed up with a local guy who wanted to produce a film. They wrote a script, held casting calls, got a crew, set up a filming schedule, found locations, edited and edited and in December of 2007 Tomorrow for a Dollar was premiered at Tower City cinemas in Cleveland, OH.  It had an aggressive schedule, they both worked full-time, and very small budget, but they did it.  It even made it into a small New York film festival.  It was something to be proud of and also an eye opening experience for The Don.  He loved the creative process, he was a movie guru, but he realized from this experience that what he loved about movies was not at all what he had thought.  When analyzing his love for movies, it wasn't the cinematography direction, it was the storytelling. His experience with directing wasn't what was most enjoyable, it was actually writing the story.

So he checked his compass, reset North, and began research for his first novel.

Here is where the true grounded dreamer comes into play.  The Don has quietly worked on his novel in the evenings and weekends, whenever he could find the time, but all the while never missing a bedtime with Piper or baseball/soccer game for Justin.  He has continued to grow his design/web career full-time so I could stay home with the kids and to ensure our family has a stable income and health insurance. He didn't let his dream negatively affect our family because he is grounded, therefore, I wasn't going to let him give up on this book...because he's a dreamer!

So here we are, 6 years of research, rewrites, proofreading, editing, tweaking and about 6 solid drafts later and The Don is about to self-publish his first novel. It was a long, hard decision to self-publish, but after much querying, research and gut searching, and a quick check of the compass, it was the new North. It's exciting and nerve-wrecking, as chasing dreams can be, but it was worth it and I couldn't be prouder of him.!

So as The Don starts this journey very grounded, I will continue to point him North...which is ultimately toward the stars.

He is making his dreams come true, as his first novel The Sinner King: Book of Fire is NOW on and  
or you can visit the website at

Thursday, May 10, 2012

The Corkstin

Someone is diagnosed with Autism every 15 minutes.

Most children are sponges as they grow up and their parents are the water they absorb constantly. They take in that water and imitate it, remember it or adjust it to fit their personality, but they are always absorbing, absorbing, absorbing.  But what if your child didn't observe, didn't absorb, just kind of floated along in the water that is their parents?

"Your son is a cork."

There it is. Who would think that hearing something like that would bring so much understanding, but it did, because she was absolutely right, he is a cork-The Corkstin.

A diagnosis of any kind is bittersweet: bitter, because no parent wants to hear that their child suffers with anything, and sweet because no parent wants suffering to continue, when it can be eased with a diagnosis. That is where we are at, Diagnosis: Aspergers Syndrome.

I can't say it was a huge shock, it is something we have suspected for quite some time, really since the first day we brought The Stin home.  He was a hand flapper and then he developed tics. At first we thought he might have Tourettes Syndrome, but the tics came and went and changed, so we decided to just wait and see if they were due to anxiety, I mean he went through so much in his first 4 years of life.  We actually overlooked a lot of the symptoms due to this. The Stin was essentially a 2-year old when he came to live with us at 4 1/2-years old. He wore 2T clothes, didn't know his ABC's and had a severe speech impediment. But after a short time he educationally caught up and started to excel and he went through a growth spurt that put infants to shame, I'm talking like 6 inches in 3 months. So the social immaturity we chalked up to just taking a backseat to all the other things he had to catch up on. But the signs were there.

Many  signs you see with Aspie's are actually overlooked as high intelligence.  Justin had a vocabulary like an adult and spoke in a very formal manner for years. Most adults thought it was impressive or cute, we were just so happy that he overcame his speech issue and seemed to be really taking to adult conversations. Then there is the high scoring on standardized tests, he was reading at a 7th grade level in 3rd grade and has tested at an accelerated level in Math almost every year.  But school is structured and follows a strict routine, and for a child with Aspergers who thrives on routine, it's no surprise that he would excel in that environment.  It's not The Stin's intelligence that has ever been in question, it is his social abilities-or lack thereof.

We nicknamed The Stin "Literal Larry," very early on based on his very literal interpretation of everything he saw or anything that was said.  Sarcasm is virtually non-existent to him and everything is viewed as black or white, The Stin sees or hears no gray. In some ways this appeared to be great, with teaching rules, but as he has gotten older and the ability to understand exceptions becomes more prevalent with friends, this has become a problem. He is becoming known as a bit of a tattler, not for any other reason than knowing that a teacher should be told when a rule is broken. But he is now experiencing situations that don't need teacher involvement, just talking it out with a friend. I am constantly having to explain commercials and the underlying meaning-"No Justin, they didn't really get an elephant to sit on that woman's chest. They did that with computers and it's supposed to help emphasis how heavy her chest feels when she breathes. It's LIKE having an elephant sitting on you." He absolutely cannot discern if someone is joking, annoyed or just being mean, and the problem is he usually defaults to them just joking around and isn't grasping that some kids are starting to be mean. This is a blessing right now, but I worry about his naivety as he gets older. If he does have a friend over we usually have to go into a debriefing mode after the child leaves. Going over the actions of The Stin-like standing in the dining room, just spinning- and the reactions of the friend- looking at him oddly and asking "What are you doing?". It's a delicate balance of being blunt about situations, but not sounding condescending. "I know that you were trying to be funny and think spinning is fun, but if your friend isn't laughing and doesn't join in, you need to realize that he doesn't find it humorous or fun, so maybe you should stop and move on to something you both enjoy doing."

The Don and I sat down with him, not too long ago, to talk about being a good friend. Because The Stin lives in his own Aspergian world and even though he wants friends, he struggles with being a good friend. It took him 2 years to learn the 10 kids on his soccer team's names. He never inquires or remembers much of anything about the few kids he has had come over to play. So we decided to start spelling out for him the basics of friendship. Give and take, asking questions and The Don brought up that sometimes you have to do things your friends want to do, even if you don't really want to-simply meaning playing basketball instead of football one day. However, knowing the literal mind our son has, I immediately had to explain to him that he is not to do anything he knows is wrong, just because his friend might want to. This was crucial, because it is very likely that if a friend told him he wanted the Stin to steal him a pack of gum, Justin would assume from our conversation that he should do that for his friend. And this is how explanations go right now, making sure we have covered all bases because The Stin currently cannot apply simple thoughts to a broader picture, especially if an exception might need to be made.

It's been a long road that few can really understand. We've been in parenting over-drive for
six years. 
We've been told that he doesn't have Aspergers because he looks at people when they talk to him...why yes he does, but that took three painfully long years of constant repetition, consequences, pulling-out-my-hair, and crying to get him to this point. But if you pay attention, he doesn't really look at you, not to communicate or pick up on your facial cues, he does it because he knows he's supposed to and that is the only reason. He has adapted or assimilated to certain situations because he was able to learn what to do from consistently being told to do so.

The problem is that because of this assimilation, we have come across a lot of scrutiny and push back. I could hear his pediatrician roll his eyes at me when I called the office the first time to discuss with him my suspicions, friends have been hesitant, family members insist he is just immature, his school reminds me of his high scores on achievement tests. Everyone seems to have an opinion and it doesn't include high-functioning autism or Aspergers Syndrome. But we have known, in our heart of hearts, that this is what we are dealing with. We see the struggles others don't see, can't see or refuse to see. We know because while The Stin has been floating around, we have been drowning in all the water it takes to get him to understand a small piece of information that comes naturally, to most people.

This has been both an overwhelming and underwhelming experience. Overwhelming because we just learned our son has Aspergers Syndrome, which is still being understood in the medical field and resources are out there, but limited. Aspergers comes up as a misspelling in this blog when I spell check. Underwhelming because it seems like a diagnosis was handed to us and now we are left to dig in our heels and find the resources needed to help him on our own. I thought the most overwhelming part would be all the information to sort through, and I'm sure that will come as I do more and more research, but it wasn't like a diagnosis for a well studied disorder, I wasn't given tons of information, paperwork, options, books, a clear plan of action, available treatments or even future appointments.  I was simply sent an e-mail with a diagnosis and clarification on how it may affect his academic future, to help with obtaining an IEP through the schools, a couple websites/phone numbers and an "I'm here if you need anything else" and that was it.

So that is that and here we are.  A little more informed, still pretty lost, but at least facing in a direction that I think is correct. I guess I had this naive thought that we would come out of the analysis/diagnosis with all the answers we needed to at least start helping The Stin in a more productive way, because we are starting to experience harder, more complicated situations and I am starting to feel more and more overwhelmed. But that isn't how it went, so now we go from here, our starting point.  I'm slowly filtering through websites, finding resources and collecting information.  I will say that this has also allowed me to start to breath a little bit more with The Stin. I found myself getting extremely frustrated and short-tempered with the constant repeating of myself. But now I have a better perspective on what we are dealing with and find it calming to remember this in those more difficult situations. I'm still trying to figure out what behaviors are due to Aspergers and which are due to him simply being an eleven-year old boy, but with time I'm hoping that will get easier. 

This diagnosis seems like a life vest that has finally been thrown at us. As we put it on and catch our breath we will slowly start to rebuild our energy for the swim ahead.  It will allow us to stay afloat as we plan out our course of action moving forward. As our confidence slowly grows and we get stronger we will, hopefully, someday be able to shed the life vest. We will never be able to completely get rid of it, because it will always be with us as long as we're in the water, but I'm hoping that we will get to a point where we can comfortably tread water on our own with our buoyant son, The Corkstin.