Friday, January 30, 2015

Versions of the Truth

It’s been the best of times. It’s been the worst of times within my four walls lately. I’ve written about much of it here on this blog. I stress that I have written much of it, definitely not all of it. My writing is my personal form of therapy. I write for others who are on a similar journey and for parents who will be facing similar issues in the future. The parents who come here and read our stories honestly appreciate my candor and honesty. 

There are plenty of warm and fuzzy blogs out there in blogosphere, if you want the fluff. My life is not all floating on a cloud of flowers, happiness and love. I am raising boys. Easy to love, hard to live with, boys. My original reason for writing this blog was so that my family and friends would realize exactly what our family is dealing with on a daily basis, in hopes that along the way, I might show others exactly what our flavor of autism is. 

I do get the occasional hater who comments telling me what I need to do differently. How I need to just kick Red’s ass to the curb like yesterday. Quite frankly, many of the people who leave the most judgmental comments are often on the spectrum themselves. Then there are those who don’t even have any freakin’ kids! Yet, they still consider themselves somehow an expert on my child and my situation. 

"Haters gonna hate. I just love, love, love." to quote Theresa Guidice, who is now in jail. 

Most of the time I just laugh at the pure audacity of the judgement. I laugh pretty hard when people try to tell me how to live my life. If I didn’t laugh, oh my God, I would be locked up in white padded room somewhere. (Although, I’ve heard those rooms are blue now. Blue is supposed to be a soothing color.)

Other times, I find myself being a little more apprehensive about what I write because I don’t want to hear what the critics have to say. Well pardon my language but…fuck that. 

I have to remind myself that there are far more people who benefit from my writing than there are who detract from it. Besides, most of the time when people try to tell you how to run your life, they aren’t all that successful at running their own. In fact, most of them are a hot mess.  I also remind myself that they are judging from their own perspective and their own life experiences which has nothing to do with my reality.

There is a big divide in the autism community between some adults with autism and neuro-typical parents who are raising children with autism.  I can understand some of the animosity and disdain for us. I don't believe that it is mean, spiteful or even personal. Their feelings about us are based on the way they see the world. Their perspective is likely based on their perception of their own childhood experiences. I say perception, because if you ask their parents or their siblings the way things happened, they would most likely have a totally different point of view. 

Blue and I were doing some research last week on John Elder Robison, the author of one of my favorite books "Look Me in The Eye". Our research was for a project he was doing for school. We found that John, his mother Mary Robison, and his brother now known as Augusten Burroughs, ("Running with Scissors") have all written memoirs of their years growing up. For their mom she wrote the years she spent raising her children. All of their stories are different. This doesn’t make any of them liars. It’s just makes their stories their version of the truth. 

In the article that we found on Lee Gutkind, a professor at Arizona State University and a specialist in creative nonfiction, said this about the memoir, “It's your story, that's what a memoir is. It's your own personal truth, and it is not necessarily factually accurate, and it's not necessarily the truth that other people have possessed."

I know this from personal experience. In our family, if any of us were to tell the story of life in our house, each story would be totally different. Red would say, how much we all worked hard to piss him off! We never did anything to make his life better. He had the most god-awful childhood you could imagine.  

Blue would say, his brother sucked the air out of the room. That he never got any attention because we gave it all to his brother. But all in all, he had a pretty darn good childhood, with the exception of not getting nearly as many things as all of his friends had. 

My mother would say, I had the patience of an angel with my children. Another day she would say that I needed to knock one of them upside the head and that they took complete advantage of me. There would be no tales of her part in agitating them and not being able to keep her mouth shut, ever. 

My husband would say, I was the best mother to our children, but I didn’t gave him enough time and attention as my husband. For all of them, their stories would be absolutely true. It may or may not be factual. 

The truth is, I really do not share everything on this blog. On Saturday, I made what I would call a film documentary of a day in my life. If I shared in total the insanity that went on in my house that day, the mental hospital would be knocking on my door asking me why haven’t I checked in yet. It would be …just way too much information. It would be unbelievable. 

That’s why I would never do a reality show about my family. It would end up being edited to tell the story that fits someone else’s agenda. And trust me, our story could be quite entertaining to other people. It would be a hit! We’d be rich! Hmm! I could pay for all of the best therapy in the world, which we all desperately need.  We could just move in to a family sanitarium. 

I have our true reality documented on tape. The reason I taped it was because, I was seriously considering looking into a therapeutic facility where Red could have his meds assessed. I thought it would be good to show the actual behavior to doctors so that they would know, I’m not making this shit up! He is acting way off! Kind of off the charts! I am wondering how much is anxiety and what could be related to the medication that is not working, or the mixture that is working against each other. I felt like perhaps he could benefit from being rebalanced out and in a safe environment sans all of the triggers that we have at home. 

Then again, the truth could just be that he is conspiring to drive me completely nuts, or subconsciously trying kill me from stress. kidding. Sort of. 

The bottomline is that I have to follow my instincts as my children’s mother. No one knows them and what they need better than I do. No one walks in my shoes. No one is privy to everything that goes on behind our closed doors. (Well, except my neighbors, because ometimes it spills out into the streets.) 

I am not the perfect mother. I have made my mistakes with them and I’m sure I will continue to do so. However, they are my mistakes to make. This is our journey, our path to follow, hiccups, missteps and all. I know for sure, that God lights our path. He is showing me the way. My impulses and inclinations have served them well so far. They end up getting exactly what they need. And so far, they are two phenomenal human beings, even with their flaws and imperfections. 

They both have an unbelievable support system because I know their father and I can not do this alone. It takes a village and ours is extraordinary.

Speaking of John E. Robison,  his wife Maripat and I are both featured in the Winter, 2015 Edition of Zoom Autism Magazine. Go check us out! 

Wednesday, January 21, 2015

If You Were My Boyfriend

This is an abusive relationship 
Autism explains the anger 
your special flavor of rudeness with sprinkles on top 
You’ve been bullied
Left out
Socially isolated
Explanations do not trump unkind words. 
They still beat down the soul
Because I love you, 
I forgive you.
I not only forgive,
sometimes I forget
I love you but…
If you were my boyfriend, 
I would dump you.
If you were my husband,
I would leave you. 
If you were my friend,
I would quit you.
But you are my child. 
Don’t speak of it   
It hurts so deeply 
There is shame 
We fear judgement 
Don’t say it aloud 
What will they think 
Always on guard 
Waiting for the ball to drop 
The trigger
The ignition
The bomb
Life in a war zone 
We hear screams 
when there are none 
Is fleeting 
A treasure we hold tight 
The calm before the storm 
The storm always comes 
Not sooner
Definitely later…
Collateral damage lies in it’s wake
Holes in the walls
Cracks in the doors 
Collectables broken 
Will the blows become physical
for you 
for me 
Will the switch flip
Goodbye self-control
Read the signs 
can’t afford to ignore them
I love you but…
If you were my boyfriend, 
I would dump you.
If you were my husband, 
I would leave you. 
If you were my friend,
I would quit you.
You’re my child 
I will help you
I will nurture you
I will guide you 
In sickness and health 
I will point you towards the light
As long as I have breath 
As long as I have strength 
Until you stand on your own 
Until the bough breaks 

Just a little something I'm thinking about today...

Many autism parents are afraid to speak of the physical and mental abuse that we go through. In quiet corners, I hear stories that make me weep. The loss of control is hurtful to all parties.  It devastates our children, when they shift back into reality. Aggressiveness or violence from an autistic child is never an excuse for parents to harm them. We were put here to help them. Read the signs, get them the help, give yourself a break, before the bough breaks.

This is not everyone's story. Autism is not one thing. Each child as unique as a precious snowflake. I am immersed in a community of parents and those on the spectrum who do have similar experiences. While I have many whose children don't have these issues. This story is not about me. It's not just about my kids. It's about many parents and many children. 

Thursday, January 15, 2015

Nothing Going On but the Rent

The road to  adulthood is long and hard.  The transition to middle school was not easy, but we made it. High school was pretty god-awful.  We've had a transition to adulthood plan in the works for a few years now for Red. I wrote about this Transition to Adulthood Plan not long after graduation. All I can say is boy, was I naive. This shit is hard!

Red has been holding the same job for 8 months now. That is huge! He still loves it and they seem to love him.  There have been zero incidents at work. Zero. He has been on time everyday, with the exception of the school bus being late once. He handled that responsibly by calling in to let his supervisor know what was going on. He has never missed a scheduled day.  Once, recently he decided he wanted the day off to go to Six Flags with his girlfriend.  He used the employee scheduling text message system to find someone to cover his shift ahead of time.

One of the issues that I am seeing recently, is that he seems to be getting up later and later to catch his ride to work. As in, literally 5 or 10 minutes before they get here is when his feet finally hit the floor.  He is also back to needing a couple of prompts in order to get up.

If you get up only a few minutes before your ride, you can't possibly do everything you're supposed to do to with your hygiene before leaving the house. You don't have time to eat.  There has been a time or two that he has gone out without taking his meds.  He usually catches his ride by the skin of his unbrushed teeth.  All of these are independent living skills that he will need if he ever wants to live on his own and actually to be able to maintain employment or go to college.  I won't be around to prompt him for the rest of his life.  I can't come to his rescue when he forgets his meds. Again ...his motivation needs to be internal, as it is when he gets up for church every Sunday morning (zero prompts).

We still encounter pretty awful behavior here at home.  Our biggest issues are boundaries, plain old rudeness and disrespect.  Of course, all of this is everyone else's fault. We all need to change and stop "pissing him off."  He is the person who sings loudly when others are sleeping, watching television, working or studying, but WE all need to change and stop "pissing him off!"  For the most part, the outside world does not see this ugliness.  It is reserved especially for those of us who love him and provide a safe place to lay his head every night.

Another thing that has improved, is the actual fighting with Blue.  (Instead he fights with my mom, who will NEVER back down by the way).  Blue has softened just a little bit and doesn't accept every invitation to fight (unlike my mom).  Blue has become  more willing to engage with Red in some positive ways.  They occasionally play games together.  Sometimes, they may watch videos on You-tube or maybe even a movie together.

What's next? 

I have been looking into various Adult Transitional Living programs for adults with autism,  Americorps,  Minnesota College of Life, etc. The feedback that I have received is that since he is 18, and his own legal guardian, he must to be 100% willing to participate.  He must be self-motivated, free of aggressive or threatening behavior, able to get along with others in a living environment, be able to and willing accept direction.

He is not demonstrating any of this at home currently.  One intake counselor said to me, "If he can't get along with his 4 family members, how do we expect him to get along with a larger group of strangers?" Well, the truth is that he is usually better with strangers than he is with us!  Of course there are no guarantees that this behavior won't transfer in another living environment.

The word I've been getting from admissions counselors is, "Why don't you keep in the 18 plus program through the school district as long as possible, so that he can do some maturing? There is nothing as intensive as the services that the school district provides ...for free." He is receiving transportation to work through the school district.  He gets job coaching, social skills training, life management, Occupational therapy and person centered planning, which is great! The problem is ...none of this gets him out of my house or away from his dependence on me.  Not to mention his sort of obsession with getting my undivided attention all.of.the.time!

I am still in the process of getting him connected with our local department of Mental Health agency for autism support services.  They can help with community support, counseling, supportive housing (group homes) and several other services.  This is all great however, dealing with any agency that is funded by the government is always a slow, arduous process. After our initial intake meeting with them over 2 months ago, we finally have a psych evaluation scheduled next week.  He will need that before he can move into any supportive living arrangement.

I am also working on getting him connected with DARS (Department of Rehabilitative Services). We finally have our second meeting with them at the end of this month. (As I said, slow and arduous.)  They will hopefully help pay for some of his education,  training, therapy and quite possibly independent living services needed in order to obtain and maintain full-time work, which he says is his ultimate goal.

Meanwhile, we deal with excessive behavior caused by his severe anxiety because of the uncertainty of everything that he is facing in this transition. He has to make a decision about college or trade school. Where will he end up living? He's still looking into driving, but afraid of the costs and the responsibility that comes along with that. Of course, he is also learning financial responsibility as an adult. Period. OMG! He will he not be able to buy everything that he wants, the second he wants it! Will he have to struggle like every young adult does while they are getting their education and finding their way in life? This will be surely be tragic! Unimaginable! 

Oh and of course, the dreaded trying to run a video editing business, with plenty of talent but absolutely no clue about expenses, profit and loss and record keeping.  In other words, he is trying to run a business with no idea how business ACTUALLY works! He is fixating more than ever on what the next gadget is that he needs to buy, in order to make this business a success! Because equipment is like magic! It will help you "look more professional and be able to charge more money."

Even though he is getting support from his job coaches, his Occupational Therapist and Ms. E. one of his old high school teachers, who comes here to work with him on his business ...none of them know what they are talking about!  We are all just conspiring to not let him spend all of his money!

On progress...

As I said, he has been holding this job for 8 months now.  When he got his first paycheck, he was furious with me when I made him take money out of he bank to pay for his own expenses, such as eating out, transportation and entertainment.  Now that he is receiving SSI, his Occupational Therapist has helped him set up a budget.  He is buying his own groceries (specialty items) that the rest of us don't eat.  He pays for all of his entertainment, eating out and dating (yes...6 months later, he still has a girlfriend). He is also paying rent!!! I've been working with him for 3 months on balancing his checkbook and keeping up with his spending.

Just the other day, he took out his checkbook on his own, balanced it and wrote out a check for his rent with zero prompts! Then he went to take a shower. And then I passed out from shock! 

The struggle is real folks.  There are so many steps on the road to independence,  I must admit, I was extremely naive about how much work this is.  Not to mention, how much anxiety and behavior we would have to deal with as a result.  I really feel like this is the hardest stage of life yet.

There is however, incremental ...progress.

p.s. I appreciate your comments. I really do. Helpful suggestions are always welcome. However ...if you just want to tell me how I'm doing this all wrong, send me a direct message.  I will then send you my address so you can come and let Red live with you! 

Tuesday, January 6, 2015

Behavior is Communication

Every single day I spend quiet moments thinking about my children --trying to understand them.  I want explanations for their behaviors.  What are they trying to tell me by this behavior? Is this behavior  hereditary? Is this a learned behavior? Is this innate? Is this manipulation? Do they get this from me? Does he get that from his dad or his grandma? Or  ...oh my God! He's acting like my father!

I know a lot of people don't like the puzzle symbol for autism.  But aren't we all puzzles? A puzzle doesn't have to indicate a missing piece.  Why can't it be about how we put all the pieces together and how sometimes, they're upside down and need to be turned around?

I think I have Blue pretty well figured out. He's nowhere near as complicated as his brother. He is a little closer to textbook Aspergers -extremely intelligent, deep thinking, thinks outside the box, very curious, a little nerdy (he says he would like to be nerdier). He will probably be a world changer.

You may not realize he has Aspergers by talking to him.  He will actually listen to you during a conversation.  He will ask you questions and be interested in you.  Although he would prefer that you see the world as he does, he is intelligent enough to realize that that's probably not going to happen. That doesn't mean that he has to be happy about it.

I'm in awe as I watch Blue constantly evolving, growing and maturing. In his last Person-Centered-Plan meeting the goal he set for himself to try to be more positive in his interactions with peers. He still has a few social issues at school. He has a tendency to comment on everything that everyone else is doing, and when it comes to peers and his brother, he must point out how completely idiotic their behavior is. Peers tend to not like that so much, so he ends up in a lot of arguments.

With his new goal of being more positive, one of his teachers who attended the meeting observed that Blue is not very positive about himself.  He can't really accept a compliment. He doesn't believe that he's smart, handsome, funny or a good friend. He tends to focus on the negative.
"Everyone hates me," he says, which is far from the truth.  The kid has his own social club for people who are different! How brave and forward thinking is that?

So for the next month or so, he is to focus on positive things about his own life.  What is the good that happened in your day? Write it down. Oprah says write down 5 things to be grateful for. We settled on 3 because of course, he hates superfluous writing (and he doesn't care for Oprah nearly as much as I do).

Since he started writing down and observing the positives, he has discovered that he actually is a good friend. He has a female friend who describes herself as "weird and most people think I'm strange." Blue is especially kind to her. When she's upset he comforts her. She is grateful for his friendship.  He seems to be the one boy, who she doesn't have a crush on.  She has told him that he is, "one of the kindest people she's ever met." That's saying something! He can actually be less than kind if he thinks you're an idiot, and most high school students in his opinion are idiots. Apparently, he sees this young lady as unique and intelligent, instead of "weird."

As a mom, I am happy that he has developed this friendship because it gives him an opportunity to get to know and understand a young lady without the emotional entanglements of a romantic relationship.  This will serve him well whenever he decides to date.

Blue has even been kinder and a little more patient with his big brother in the past few weeks. There have been moments when they hang out together.  He has been teaching Red how to play one of his favorite video games. They've watched movies in Red's room. It's been incredible!

Of course, there are still those moments where he's ripping Red a new one, especially when Red is being his super annoying, button-pushing self (a behavior I believe he inherits from my father).   Still, there is improvement. I appreciate any time that he gives to his older brother both because it makes Red happy, but mostly because it means for the moment,  Red isn't bugging the shit out of me!

Red on the other hand, completely baffles me.  I've been told many times that behavior is communication. When a child behaves a certain way, they are telling you how they are feeling, rather it be good, bad, anxious, depressed.  They are reacting to social and environmental stimuli.  For the life of me, I can't understand Red's motivation behind certain behaviors.

Some behavior is for attention.  He craves being the center of attention and if he isn't, he will find a way to make a situation be about him, good or bad. Hence, Christmas day for us this year was supposed to be more about relaxation, Christmas music, and just our immediate family unit.  Honestly, I would have preferred that one of the boys went away to spend time with family.  Unfortunately, that didn't work out.  I specifically tried to take some of the pressure out of the holidays, both for myself and for the boys. I didn't make it about gigantic gifts or large lists of wants.  That usually creates way too much anxiety and drama.

So my dear son Red found a way to create that drama anyway.  He couldn't allow us just to enjoy the relaxation. He had to stir things up and let us know his dissatisfaction with the world and his family in particular.  Where as Blue went out of his way to get me a small, thoughtful gift. Red made sure that he got several gifts for his girlfriend, but only wanted to know what his father and I  had for him and why he didn't have more?

I wish I could understand him more.  I am in constant thought about his behaviors and motivations ...wondering how I can help him or help him help himself.  How much is his personality? How much is autism, depression, oppositional defiance? What is related to medication? What is this medication really doing for him? Is some of it helping while some of it is making matters worse?

I'm beginning to see some of my father in him. The button-pushing behavior is definitely a trait handed down from my dad. My father loves to say provocative things both to get attention and to get people stirred up or upset.

I don't know if I will ever understand him completely. Maybe he is not to be understood. One thing I know for sure, this transition to adulthood seems to be the hardest stage of his life yet least for me. I will continue to support him in whatever ways I can,  even if that support is from a distance. Sometimes, it's just better to work in the background and let him figure his own life out with the supports that he has in place. He is so blessed with a team of people that are working with him to help on the road to success.  The world is his for the taking, he just has to stand up and grab it.

Hopefully, I will live to see the day when he finally does.