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Sunday, July 19, 2015

Bed of Roses

Photo Credit: Genius.com
“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 However, it’s been replaced by worry about where he is.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. 


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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. 

Friday, July 10, 2015

Life In Living Color

Recently, I had to make some tough decisions about Red. It was really hard for me as any decision is these days. My capacity for decision making has been severely handicapped in recent months, maybe even years.  Being in a constant state of panic can do that to a girl.  My anxiety has been through the roof!  I can think  something to death and back to life again, and still can’t decide whether or not to move forward. What if this happens? What if that goes wrong? What if I ruin the rest of his life? 

So Red is out of the house, temporarily in a therapeutic environment getting some much needed help. I can not and will not get into details of where he is in order to honor his privacy. I will say this, for the first time in a very long time. I know what it's  like to think for more than just a few minutes, in my own home without being interrupted. This is a peace that I forgot existed.  

There hasn’t been one raised voice. There has been no screaming …no ranting, no physical fighting. I slept the other night for the first time in weeks without having dreams of fighting someone. In my dreams, I’ve been fighting with everyone for weeks now. I could sleep 8 hours and wake up tired like someone had just kicked my ass. The first night he was out of the house, I woke myself up laughing out loud from a silly dream. No irony there! 

My emotions are mixed.  I am ambivalent, sad, scared, happy, relieved. My problems are not solved.  We are just taking a first step in the right direction. More decisions await me which I am not looking forward to dealing with but for now, I can only take one day at at time.
Red -Age 3 Hallween
I have moments when I wonder, did I to it all wrong when it came to raising Red? Did I come to the rescue too many times?  I know for sure that I spoiled him.  But the truth is, I didn’t raise him any differently than I did my other 2 sons.  Blue is very independent despite my indulgence.  My eldest stepson, who I raised from the time he was 5 years old is independent as well.  They all have their issues, but Red is just different. He has been from the day he was born. 

The truth of who Red is as a young adult is being shown to me more and more each day. My eyes are open and I am seeing things that I have never seen,  as I pull back on what I’m willing to do for him.  He fights back with all of his strength.  As it all plays out, a light shines on the truth of what needs to be done to cut this cord of co-dependence.   

There is guilt.  There is sadness, but at some point, you have to let go of situations that you cannot control. It's not easy when it comes to your child, even when your child is a young adult. My love for him cannot be described, maybe not even understood. He is a part of me. I feel his pain and anguish.  But I know that I have to let my bird fly.  I may have to push him out of the nest even though he thinks that he can’t. I know better. Not only that, but I have another bird here that deserves a mother who is present and always at the end of her rope. He deserves more than being mothered on auto-pilot because my light is being stamped out. 

I woke up the day after Red left, not knowing exactly what to feel.  The first thing that morning, I read these words written by a dear friend of mine and fellow Aspergers Mama, Johanna on her Facebook group, "Faith, Love and Inspirations"...

“We are called to be who we are and who we are becoming, but we are not called to be everything to everybody.
We are not even supposed to be the magic band aid that fixes everything for any other somebody.
We are supposed to be the one's who keep our own lives in order and in balance so no one else needs to come in and be our shining knight on the white stallion. 
Even Mother Theresa did not aspire to help everyone. From what I have read, she simplified her own life down to a few essentials and THEN devoted herself to helping the one in front of her. 
If we have a high needs dependent child, that would be our assignment, but only after taking care of ourselves. 
Mother Theresa did not live such a long life by denying her own physical, spiritual, emotional or medical needs. She simplified her wants to meeting her own needs so she could serve. 
As wives and mothers, we are NOT supposed to try to *keep everybody happy*. What a waste of a human life- trying to keep someone else from melting down-- NOT my assignment. 
I did, as my mother did before me, try for decades to keep my people happy, until I realized that all my accommodating others was erasing me. 
I decided I wanted to be me right out loud in living color again. I wanted to meet my own needs, exercise my right to be, to be heard, to have a say, to take care of me and nurture me-- because it wasn't anyone else's job to do that for me and-- having no infants or toddlers left among my children-- It was no longer my job to do that for anyone else. 
That is how I would describe learning to have Boundaries. The funny thing is, if I had NOT begun to exercise healthy Boundaries, I would never have stopped trying to keep everyone else happy-- and I would never have begun to recognize how dysfunctional all my people were always on the verge of a meltdown or withdrawing from basic life responsibilities and expectations. 
I would have NEVER seen that there was a pattern to all the craziness that had the diagnostic label of Asperger's Syndrome.
Boundaries in dealing with my family saved my life, but I still have to choose daily how to set my boundaries with other needy people. 
I have stopped helping everyone. It was never my assignment. I am my first assignment. 
When my basic needs are met, I am in a much better place to be of help to someone else IF they are my assignment.”

Johanna was speaking directly to me when she wrote these words and they touched my heart and made me think about the situation that I am facing. I have to take care of myself. As mother's we all need to be reminded of that. So, I thought it was important to share her words with you. 

When we have babies, we don't think about how hard the transition to adulthood will be.  Of course, we never imagine  having a child with special needs and all that that entails. Some things just can not be imagined.

Johanna also occasionally writes on her blog, "Faith, Love & Inspirations." Please check her out and consider joining her public Facebook group. 

Monday, July 6, 2015

A Fortunate Slip -Guest Post

By Leo, of Autism Blues 

A Fortunate Slip of the Lip

I could have sworn he was downstairs. Really. I wouldn’t have said what I did if I knew he was in his bedroom—well within earshot. As Katie and I were going up the stairs this afternoon, I was recounting how this kid (#4, nine years old) had taken such good care of his younger brother (#6, six years old) at the neighborhood pool. If I had known he was in his bedroom, at the top of the stairs, changing out of his bathing suit, I would not have said, out loud:

“And [this kid], our autistic son, did really well today. So much for the old myth about empathy!”

“Dad? What does ‘autistic’ mean?”

My heart sank. It was probably the first time he ever heard himself described as autistic

It’s not that I was hiding it from him. I had been wanting to tell him for some time now. I just didn’t know how to do it. And I didn’t want to manufacture some Hallmark moment where there would be this big reveal and a whole new understanding. I wanted it to be natural and, well, right. (Plus, I was also a little chicken.)

No Good Opportunity.

You see, he’s one of six, and they’re all autistic. His two older brothers and older sister already know about their diagnoses—and they found out more or less by accident as well. At least, it didn’t happen on my terms and in a way that I wanted it to. (Insert chicken squawks here.)

So autism is pretty much the lay of the land in our family, and that means he doesn’t really stick out at home enough to wonder why he’s different. All the kids present a pretty consistent profile of being on the higher-functioning end of the autism spectrum, so he’s got a built-in tribe of autistics to relate to. 

He also manages to blend in pretty well with his peers at school—at least so far. He’s only in fourth grade, too which means that his classmates are too busy running around on the play ground to pay much attention to his quirks or language glitches. Plus, he works hard to try to fit in. It’s not perfect, and it can lead him to come home tired, moody, and explosive. But it works. 

So there didn’t seem to be any need to explain autism to him. (Squawk!!)

Stumbling into The Talk.

Anyway, there I was, completely unprepared for the talk. But there was no getting around it; I had to answer his question. 

I brought him into our room along with Katie, and asked him, “What did you hear me say?”

“You said I was autistic and I have empathy.” 

“That’s right. Do you know what empathy means?” (I was stalling for time.)

“No.”

“It means that you care about how other people feel. It means that you can feel their feelings, and you want to help people who feel bad. That’s a really good thing, and I’m so glad you are like that.”

“Okay. What about autistic?”

I hesitated, not sure exactly what to say. Then Katie stepped in and saved me. “It means you think outside of the box.”

O merciful intervention! I knew that this kid thinks too literally to grasp metaphors like that. But that was a good thing; it gave me something concrete to react to. I didn’t have to come up with a complete explanation out of nowhere. The talk was happening all by itself.

Autism Is. . .

So I told him that “outside of the box” means that God made his brain a little different than most other kids’ brains. I talked about the cool gifts this brain gives him, like his laser focus on math and cooking and singing. He’s got some real talents there. Then I talked about challenges like how he can have a hard time putting words together or how he sometimes struggles understanding when someone’s talking to him. I hit on a couple of others, like emotional regulation and his need to jump around and get giddy sometimes. Then came the Big Finish.

“So there’s something a little different about you. That doesn’t make you weird. Just different. Autism isn’t a disease or a sickness. It just makes you special. Got it?”

“Yeah.”

“Any questions?”

“No. Can I go type on the computer now?”

“Sure thing. Knock yourself out.”

No Drama.

And that was that. No fuss. No drama. No nothing. None of the baggage that the world gives to the word autism. None of the baggage that I can give it, either. Just another word to help him describe himself.

In a way, I’m glad that it happened like this. I didn’t have time to worry about developing the perfect speech. I didn’t have the luxury of turning it into a thing, which might risk emphasizing the difference more than I wanted. I didn’t have enough of a chance to screw it up, either.

I also liked the way it became just another thing that happened today. Mind you, I’m not sure how much of it he really grasped. But I didn’t want to push. It doesn’t really matter anyway. We began a conversation today that will unfold and deepen over time.

No Big Deal.

So there you have it. My son found out that he is autistic, and he’s doing just fine. An inopportune-but-opportune moment presented itself, and we did our best with it.

It may not sound like the best approach, but there’s something really appealing and “normal” about things like this happening within the natural flow of everyday life. It helps the kids see that it’s not a big deal. It’s one facet of who they are, and it has no bearing on how much we love them or how much dignity or value they have—in our eyes or in God’s eyes.


That’s four down, two to go. I think I’m getting the hang of this thing. So bring it on!

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Leo is one of my favorite autism dads. You can find more stories about his family on his blog "Autism Blues" . He also runs a Autism Blues Facebook community 

Leo and his wife Katie live in Maryland with their six children, ages 6 to 15, all of whom are on the autism spectrum.  Yes you read that right! Six children on the spectrum.  I am truly inspired by their humor and grace as they parent their six children.