Tag Archives: coping

The Conversation Continues…

The comments continue to pour in, both through email and on yesterday’s post and the post from the day before on the topic of violence and coping when overwhelmed and overloaded.  A number of parents have emailed that a behavioral program helped tremendously and a few wrote about various medications they’ve (almost always) reluctantly given their child as a “last resort”.  One parent wrote:  “I had to go to the ER because he broke my nose and when the doc saw the bruises on my arms and my broken finger they called social services.  I was told my child would be taken from me.  Another doc prescribed _____  (anti-psychotic drug) and told me it was the only shot I had at keeping my son with me.  Sometimes the choices we parents are given suck.  I never went back to the ER even after he broke two ribs and my toe.  Years later he was able to type that three kids were bullying him on the school bus and had been for years.

Has anyone had experience with being given a behavioral plan?  Did it help?  If it did, what was it exactly?   And if it didn’t, and you don’t mind sharing about it, what was your experience of it like?  Did anyone have drugs given to you as a child and what was your experience with that?   As always, I will not use whatever name you give unless you leave it in the comments section of this blog or give me explicit permission.

Feministaspie wrote:  “The adults around me would tell me to take deep breaths, count to ten etc, and while I knew they meant well (and frankly, that was a much better way for them to deal with me than some of the other things I’ve read online, so I’m lucky really), that sort of thing didn’t really work for me. This was because at the time, I’d basically go into fight-or-flight mode so I absolutely was not thinking about that at all. I think it might also be to do with taking things literally, because apparently I’d just scream the numbers 1 through 10 at whoever told me to count, which obviously didn’t help matters. In hindsight, perhaps a more detailed plan was needed as far as that was concerned!! This made me feel really frustrated because that sort of thing was supposed to help and it didn’t and I felt like it was completely hopeless.

Ashmire wrote:  “I’d also add that sometimes there is kind of a feeling of powerlessness, of knowing that no matter how bad I hurt someone I don’t/didn’t have the capacity to hurt them as much as they are hurting me, because they are hurting me with emotions and I can only use physical damage which just doesn’t, can’t, ever, inflict as much pain as emotions can.

bjforshaw wrote:  “As for what helps, I would say that being given space is paramount. Confronting the violence feels like being cornered and makes it worse. What helps me is whatever makes me feel safe and unthreatened. I’m not able to speak or even type (I hate to think what effect my pounding would have on my keyboard) but as long as I’m not pressured I will be able to talk about it after I calm down. It has to be in my own time, on my own terms. That’s when I can start to explore the causes, the triggers.

In his blog post, Violence as a Means of Expression, bjforshaw writes: “Why do I do it? That’s a very important question. I am usually able to communicate effectively but emotion is a minefield: I have alexithymia which means I have great difficulty identifying and describing my emotional states. Strong emotions, especially negative ones, are very stressful. Add to that the fact that I become practically non-verbal when under stress — words are in my mind but I can’t get them to come out of my mouth — and you have a recipe for disaster. I’m not able to communicate my state of mind or my immediate needs which adds to the sense of frustration.

There Once Was A Girl…

There once was a girl who was in tremendous pain.  Her pain was so great she couldn’t manage it.  She tried, believe me, she tried.  She immersed herself in books, particular those dealing with people’s neurology, but also dabbled in science fiction, mysteries, thrillers, horror, romance, this was before the age of memoirs, so she devoured studies of other people written by psychiatrists, therapists of every ilk and doctors.  Losing herself in reading was thrilling, but it didn’t help her sort through the intense feelings she had.  All those books couldn’t begin to heal her often overwhelming feelings, anxiety, sadness and fear.

She thought that moving away might help so she did that, and then she moved farther and farther still and eventually she found herself living in another country and all those intense feelings moved right along with her.  By this time she was using substances to quell the pain, on a daily basis.   She knew she could zone out and for a little while anyway she would feel nothing at all and it was a great relief.  But as soon as the substance wore off she was left, once again, with herself.  She went from seeking relief, to needing relief, to feeling that if she didn’t do those things that gave her even momentary solace she might die.

There is no other way to describe what she went through when she could not indulge in certain behaviors.  SHE WOULD DIE.  She did not know this for a fact, but she felt sure that she could not exist without the things that changed her consciousness.  She was convinced that these substances helped her cope and that without them she would not be able to, and all those feelings would overwhelm her, suffocate her.  She lived in terror of this.  Years went by and she did the best she could, but her need for calm and peace was never satiated.

As time went on she knew that if she was going to continue living in this world she would have to change, she would have to find other ways of coping, of just being.  And again her fears both mesmerized and caused her to stay stuck doing the same things again and again that now did not give her the relief they once did.  She knew in her heart she would die if she continued doing what she had been doing.  She knew it was only a matter of time now.  The thing that she once thought was keeping her from dying, was the very thing that would kill her.  Still, how to change?  What could she do?  How would she stop?

At first she sought help from doctors and therapists and the medical profession.  She tried the various things they told her to do.  She made charts and ate specific foods and took supplements and lots and lots of vitamins, but nothing she did made a difference.  She went to psychologists and talked and talked, for years she talked, and while that helped her understand some of what ailed her, all that talk didn’t help her stop hurting herself.  One therapist, someone who loved her very much and had been trying to help her for many years said to her, you must find others who do what you do, they will help you.  So she found them.  Hundreds of people just like her who did the same things she was doing.  They listened to her pain and shame and they nodded their heads and told stories of their own and they said, “Here. Grab our hand.  We will help you.  We will show you the way through because you cannot do this on your own.  This isn’t about will power, this isn’t about desire, this is about needing help.”  And so she did, though she was filled with abject terror and was not at all sure she would be able to follow them, she did.  They taught her to breathe when she was scared and they took her calls in the middle of the night and they came to her when she was too frightened to leave her apartment and they sat with her when she was too overwhelmed to move.  They taught her that she alone could not help herself, she needed others.  This was both a great relief and also her greatest fear.

Over time she learned to tolerate all those feelings she once believed would kill her.  It was incredible!  She could not believe she was able to sit with feelings!  This was a revelation and she grew stronger and more able to be in the world.  She learned to ask for help and she found some people were safe and others were not.  She learned to be in a relationship with another person and to respect them and to honor their boundaries and she experienced the joy of kindness and acting in kindness for no other reason than because it was a part of who she was – to be kind.  She experienced the joy of helping others who were in pain and came to believe there is no greater gift in this life than to offer a hand to another being who is in the depths of despair and pain.

(To be continued)

Autism and Parenting

I have been away from my family for eleven days now.  I am in Aspen, Colorado where I needed to reopen my store for the season.  There have been a great many things I needed to attend to, so here I am.

And there they are.

In New York city, my family – Richard, our son, Nic and Emma, the star of this blog.  To say I miss them would be an understatement.  I hear from Emma’s teachers.   They email with updates and about how Emma had a rough day the other day because the rest of her class was allowed to go to the roof to swim, but Emma had to have her final session with her music teacher, and so stayed behind.  Emma loves nothing more than water and swimming.  So she was beside herself, upset, crying and my guess is she hurt herself, though I haven’t confirmed this suspicion.

Later, an old classmate came to the school to visit and Emma was so excited to see her.  She kept saying, “Maddie’s back, Maddie go home on the bus on Wednesday, Maddie in Becky’s class”.

When they tried to explain that Maddie was only visiting and would not return, Emma kept insisting Maddie was back.

These kinds of things are hard for me to hear, the distance between me and Em making it all the more so.   I can’t hold her, I can’t be there to lessen the load for my husband, I can’t really do much other than call and listen.

People say – you’re changing diapers one day and then you’re helping load up their u-haul with their things.  It all goes by so quickly.   But whether one has children or not, it still goes by quickly.  Children are just larger than life markers of it.

Stop and look around, I tell myself, you’re in one of the most beautiful places in the world.

And then I remind myself to breathe.

For more on Emma’s impact on our lives and how we cope, go to www.EmmasHopeBook.com

“Let’s Talk to Her”

Making the decision to talk with Emma about something has not been a consideration until recently.   For those of you who are loyal followers of this blog you might be caught off guard by the hopeful tone to this first sentence.  If so, you’re right.  It’s all part of the roller coaster ride we’re on.  Feeling despair, feeling hopeful, feeling despair, feeling hopeful…  Like some sort of Möbius strip, we twist and turn.  Someone said to me once:  feelings aren’t facts.  I try to remember that when I am feeling gloomy and attempt to forget it when I’m optimistic.

Fact:  Emma waking in the middle of the night disrupts the entire family.   Richard and I decided a few weeks ago we would try talking with her about it with varying degrees of success.  See What Now? , Wake Up and Good Bye Diapers! The fact that we had even one night without the sound of her mind-numbing shrieks or her stealthily crawling into our bed at 2:00AM was progress.  So last night I decided to spend some time going over what I hoped she would be able to understand.

“Em, it’s time to get ready for bed,” I began.

“Go to sleep now,” Emma said, nodding her head.

“Yes, and when you go to sleep you stay in your own room,” I waited for a response.

“Okay, Emma?  You have to stay in your bedroom all night.  You cannot wake Mommy and Daddy,” I waited for some indication of understanding.  When there was none, I added, “You have to wait until it’s no longer dark.  If you wake up in the middle of the night you look out your window.  If it’s still dark you stay in your own bed and go back to sleep.”

“Go into Nic’s room,” Emma whispered.

“No, Em.  You stay in your own bed,” I explained.

“You have to wait,” Emma said, nodding her head up and down.

“That’s right, Em,” I smiled at her and kissed her forehead.

“You have to pull on Mommy’s robe.  Mommy can I come get you into the other room?”  Emma said.

“No, Em.  You wait until it’s light out.  Then you can come into Mommy’s room.”

“You have to wait,” Emma said again.

I continued to go over the plan with her, step by step.  I attempted to explain the need for her to try and go back to sleep if she woke up in the middle of the night, the importance of staying in her own bed.  I even went over breathing techniques to help her if she began to get upset and wanted to wake us.  Emma nodded her head throughout all of this and interjected with things like, “Mommy’s so upset” and  “You cannot wake Mommy”.

“You’re beating a dead horse,” Richard would have said had he been there to witness the ‘conversation’.  I stopped talking, unsure if any of what I said had been understood.

When it was 6:30AM and Emma had not appeared, I smiled as I readied myself for the day.  By 6:50AM and still no Emma I congratulated myself on a job well done.   As I made my way out to the kitchen I paused at Emma’s room and peeked in.  Her bed, a crumple of sheets, duvet tossed on the floor, pillows scrunched into the corner, looking as though a brawl had broken out, was empty.  I opened the door to Nic’s room and saw Emma snuggled up to her brother fast asleep.

Nic woke with a start and groaned.

“Hey Nic.  Are you okay?” I asked.

“No,” he moaned.

“What happened?” I asked.

“Emma!  She kept me up all night.  I’m so tired,” he said.

“Oh, Nic, I’m so sorry.  Was she awake a long time?”

“I don’t know, she kept going like this,” he said putting his hand over my mouth.  “And then when I ignored her, she’d do this,” he demonstrated by pushing my forehead with the palm of his hand.

“Nicky, I’m so sorry.  I told her not to wake us, so she woke you instead.”

“It’s okay, Mom,” Nic said looking up at me blearily.

“Ach”, I muttered under my breath.  “Next time come get me, okay?  I’ll get her out of your room,” I said.

“Yeah, okay Mom,” Nic said.

As I rode the subway to my studio I consoled myself with the thought that even though I feel terrible for Nic that Emma woke him, it is an enormous sign of progress she understood at least part of the message I tried to convey to her last night.

I will speak with Emma again tonight.  Maybe she’ll understand the entire message.

Who knows?  .

As my brother Andy says, “Who knows anything?”