Sunday, July 19, 2015

Bed of Roses

Photo Credit:
“Life is not a bed of roses, but at least there is a bed.” -my personal Facebook status one of the nights Red was away. 

The peace in the house is a good thing. The fact that I’m not running around town like a chicken with her head cut-off is nice. The breathing and thinking space is a welcome change. However, it’s been replaced by worry about where he is. How is he feeling? What happens next? Why does my child have to struggle so much? Why can't he just be happy? 

He actually asked me that question during a phone call the other day, “Why does my life have to be so hard?” Of course, I have no answer. Why does MY life have to be so hard? Why are many other people’s lives much harder? Why can't I plan a vacation this summer because I'm here dealing with this heavy shit and I don't know when the nightmare will end? 

Yesterday was the darkest day I have experienced since, I can’t remember when. As a matter of fact, I have to say that this time period in Red’s life has been one of the most difficult periods …ever, in raising hm.  He’s like a bull in china shop. He’s very big, strong, stubborn, hateful even.  He is an adult by definition, but a child in maturity and decision making ability. There is no taming him into what I want him to be. He is fighting me every step of the way.  And of course, I’m not the most intimidating bullfighter that the world has ever seen. He knows my weak spots and he knows very well how to play the game of making me think that he can’t help certain behaviors when he is actually in complete control. He's been playing this game for so long, he knows how to use his autism as a weapon in his arsenal. 

We had a family therapy session a few days ago. My child walked in (yes I know he’s almost 20)  looking tired and wounded. He was visibly anxious, worried, his legs shaking back and forth, back and forth. During the session he went from beginning to take some responsibility for his behavior and actions, and then back tracking —blaming everything on us.  

It was the hardest thing ever to walk out the door and leave one of my limbs behind. As my husband said, “He’s not a baby. This is adult real life. We can’t protect him from everything. He needs to see the reality of life.” I did not want to hear his words of freakin’ wisdom.  I just wanted to cry from the depths of my soul without listening to reason. “Don’t try to fix it. Just don’t. You can’t,” I said. Just let me feel this pain.  You can’t take it away. You can’t make it better with your practicality and rational thought. I knew he was right, but for me, in that moment, none of it mattered.  All I could see is my child …a part of me, in pain. I saw desperation, confusion, discomfort, anxiety and I physically felt all of it.  And the worst part, is there was absolutely nothing I could do about it. Nothing. 

We checked him in to what appeared to be a lovely facility. The building was clean and relatively new, located on a quiet oak tree-lined campus on a few acres of property. The nurse who did our intake assessment was tuned in, helpful and professional.  You know how some people can give you the feeling that they are just doing a job and don’t give a shit about you.  They look through you instead of at you.  Well, I didn’t get that energy from her. It was like she saw me. She saw him and understood what our family has been dealing with. 

Only after my first visit to see him did I realize that even though the facility was lovely, the pain experienced inside those walls, was anything but. It was life. It was cruel, adult reality. There were other people there who were dealing with their own monsters and skeletons and it just wasn't pretty. 

When I finally made the decision to move forward with getting some much needed help for Red, I was exhausted by the behaviors we had been dealing with over the past few years really.  I always wondered what was really him and what behavior was exacerbated by the medications.  Did he even really need everything that he's taking? It was my dream to actually take him off of everything and start over.  I’m not a doctor, but sometimes I play one in real life. I read and research like a medical student and I feel like I know my boy better than any doctor ever will.  Sometimes, I think I know him better than he knows himself.  He’s not always in tuned with his body.  I’ve had to teach him to pay attention to how his body is feeling and reacting and that’s still a process. 

(By the way, I urge you -if you don't go for guardianship of your young adult on the spectrum, at least attempt to get Power of Attorney, especially Medical, so that you can be involved in helping them make the best decisions for themselves.  It's much cheaper and easier to attain than full guardianship.  Personally, I feel that it gives them more dignity than taking away all of their rights. Of course, there are cases where guardianship is the only choice.) 

I had talked myself out of it, and back into moving forward a million times. A huge part of me felt relieved to finally be addressing his medication issues in a controlled, safe environment. I hoped that some more intensive therapy would help him to see his life more clearly. He’s been incapacitated by fear and anxiety, which was showing up as anger, disruption and disdain for our family.  Knowing that I was probably (key word probably)  doing the right thing, didn’t make watching the process any easier. 

I am a creature of habit and comfort. I have been described in the past as being like a cat. I love to cuddle up all by myself, in my bed, on a comfy chair, in a hammock or wherever. I take my down pillow to most places that I spend the night. I even have a favorite travel blanket that goes with me when I’m away from home. My home is not luxurious by far, but it is quite comfortable.  As much as Red makes me crazy, he is by definition an extension of me.  It wasn’t easy to see him outside of his comfort zone, looking so tired, defeated and confused. However, it was the beginning of a process that we both needed to go through. Although the experience of having him away was extremely difficult and humbling for both of us, so far I will say that it was worth it. 

While he was away, he came to the realization that his life here at home is not as horrible as he has been perceiving it to be.  In fact, although he has challenges, he is really blessed beyond measure.  He met people who had much more serious, intense issues and problems than the ones that he faces. There were kids there who have suffered real abuse and have no loving family to return to. He saw other people’s scary looking, sometimes violent meltdowns. It opened his eyes to see how his anger can look to others.  He was approached by someone in distress who began yelling and cursing at him. He did not react. He walked away. He was able to demonstrate restraint under extreme circumstances. He was able to hold it together in the midst of chaos. Surely if he can do that with a stranger, he is capable of doing it here at home with his brother.

He had no outbursts of his own while he as there. The biggest issue was his anxiety and asking questions over and over again.  He was trying desperately to process the therapy and worries about his life and his future. He was social with the more kind hearted among the group. He  attended group therapy sessions and learned that lots of other people's lives suck way more than his does. He now seems to have a greater appreciation for what he has here at home …at least for now. I realize that we are probably in a honeymoon period., but I’ll take it and hope that it lasts.  

He's on contract with us.  He knows that certain behaviors will not be acceptable. He has proven that he can hold it together when he wants to, so he will be expected to do it here.  We're not buying the bullshit any longer.  In turn, as a family we have to all get better at showing him love and support —being forgiving of annoying behaviors that are attributed to autism.  

When we met with one of the doctors on staff before we brought him home,  we were cautioned about bringing up group homes or moving out for a while.  Red is is feeling very abandoned and unloved. Actually, traumatized by it. His behavior has been pretty damned unloveable, but the doc sees this as his attempt to get attention by any means necessary.  

We are looking into additional therapy and supports that will help him to grow into a more independent adult, but not discussing every detail with him until we have things in place. He needs to worry less about the big picture, so that he can focus on just taking one step forward at a time, not becoming overwhelmed in the process. As a family we are trying to make him feel supported and loved,, while being firm about our expectations. It's likely that we will need therapy as a family to maintain that balance. 

Then of course, I need my own personal therapy.  So basically, what I'm saying is we should just have a therapist move in with us. 

Thank you so much for so many of you, friends, family and readers who have reached out to let me know that I am supported and loved during the difficult times. Your phone calls, posts and private messages carried me through. 


In this post I tried to express what we went through, while avoiding some of the details.  I am writing with Red's permission. He hopes to make a movie about his life some day, so that people will know what it's like face the challenges that he has faced. 

I love your comments and feel free to share this if you think it may help someone.