How Christmas and the Naturopath Found Me Again

I am Christmas Crazy this year. This is new.

It started a few weeks ago when I texted my BFF:
"Just bought the old MWS, Amy Grant, and James Last Christmas albums on my phone. But every time I start listening to them, I cry. Why does this keep happening?"

My BFF is all things music, including her own music school, (which she just won an award for) so I assumed she would have implicit understanding as to why this vexing phenomenon kept occurring.

She replied:
"Ya I know. Me too. A kinder simpler, easier time."

And I was relieved, at the very least, that I'm not completely losing my marbles.

But later that week, as I played these albums in my car, I began to think there's something even deeper going on in my connection to this music. Certain songs reflecting a magical quality still make my eyes sparkle and leave me with a sense of wonder, and that's where my tears kept spilling. I know I used to have the wonder when I was a kid, but the last few years I've been so beaten down by life, I had no magic left... no life left, really.

In my professional work, I teach a class to grade 10 students called, "Losing Yourself, Finding Yourself, and the Journey In Between."  At the beginning of the class we talk about what it means to lose ourselves. Firstly, how do you even know what "yourself" is in the first place? Especially when you're in grade 10.  So we start by connecting with who we really are, and I tell them "Who you really are is who you were when you were a little kid, just playing." And then we recount our favorite play activities: action figures/dolls, Lego, hide and seek, little green army men, etc. Then once we've re-connected with our inner little kid, we look at what separates us from that little kid: stress, bullying, trying to fit in, trauma, suffering, etc. We then look at numbing behaviours we engage in to relieve the suffering, and how if we never move beyond those numbing behaviours, we never get back to that little kid again (who you really are). (Materials credit: Brene Brown, Gabor Mate, Richard Rohr).

Back to the Christmas music, I realized the parts that caused me to cry were the parts that caused/created stillness, holiness, awe, magic, and tenderness. And as I kept experiencing the feeling of awe in the mysterious and magical components in the music, I realized that I have finally re-connected with my real self again. I, Karen, had come back to life after totally losing myself to trauma, heartbreak (read earlier blog entries) and suffering.

Okay. I was aware that I am feeling more like my old self since I started some naturopathic supplements in October (apparently I was a little dopamine deprived). But why have I failed to connect with Christmas for so long? Its not just the suffering and trauma of being a single parent to a non-verbal child with profound autism. Because I was struggling with lack of Christmas magic for much longer than that. And then I remembered that Christmas music was reviled in our home previously, including a ban on any singing along. I still played it quietly where it wouldn't upset others, but I couldn't express joy, delight, or childlike awe with it. Of course when one is in the midst of such dynamics, its nearly impossible to identify what's really going on in such circumstances, and I continued to mute Christmas so as to keep all members of the household unagitated. And as I stuffed my Christmas spirit further and further down, hid it away with my inner child, and waited until it was safe to come out again... And it wasn't safe to come out again until my neurotransmitters had re-balanced after the last 10 years of trauma.

It all made me think about what the true Spirit of Christmas really is. As a person of Christian heritage, I believe it starts with the birth of a little baby who brought new life to a weary world. (Of which we celebrate in winter, although it seems Jesus of Nazareth was more likely born in spring).

But the point is, celebration of new life.

Of fragility.

Of vulnerability.

Of fleeting awe.

Of mystery.

Of beauty.

Of the essence of life itself.

Merry Christmas!

Love, Life and 50 First Dates.

So the latest ASD development in me and my 5 year old's life is that he no longer sleeps his meager 10-11 hours a day. Now he sleeps 8-9 hours a day, and he doesn't go to sleep until 10 or 11pm. This is a tough adjustment for me as, even when childless, I was always ready for sleep by 9:30pm. For the last year or so, he's gone to sleep between 7-8pm, leaving me an hour or so for personal time and unwinding before bed. I don't get that anymore.

I've decided to cope with this 8pm-11pm time lag in his bedroom, waiting for sleep, by reading.

This weekend I was pleasantly surprised to find an entire change of perspective from an unexpected source: Wildflower by Drew Barrymore.

Drew was talking about her movie magic with Adam Sandler, and specifically referencing the movie 50 First Dates, which I love. If you haven't seen it, its rom-com about a marine biologist who falls in love with a girl who was in a car accident, causing her to lose her memory every time she goes to sleep, effectively re-setting her brain back to the morning of the day she had her accident. The theme of the movie that Drew references in her Wildflower book, is that you have to fall in love each and every day with your life that you have. (Honestly, I'm not sure I noticed that theme in the movie; it was purely entertainment for me).

But reading Drew talk about falling in love with the life that you have (and she had a lot of negatives going on too), I started to think about that question for myself. And I think I am in love with the life that I have -- I really can't imagine life without my profoundly autistic and adorable son -- but I let myself get so overwhelmed and flustered that I don't have ability to realize and/or experience the love half the time. Not unlike those of us who love the surf, but its like I'm always caught in the barrel of the wave, I can't tell which way is up, and it makes me forget that I love the surf, because it always ends up becoming about survival. And that lets fear in. And fear steals the love if you let the fear reign.

And yet simply realizing that I AM in love with the life that I have, re-energized me from an 8 week slump of extreme exhaustion and overwhelm (ok, I also got a rare 10 hours of sleep the night before, so that might be part of it too). So how do I get back to being in love with the life that I have, everyday?

My thoughts returned to the resolution of the 50 First Dates movie (spoiler alert). Lucy's (Drew's character) new husband and family help her life to move forward from that one day where her memory starts from every day, by making her a video tape. Now every morning when Lucy wakes in her bedroom there is a video tape, and it shows her that she had a car accident, footage of her recovery and her current memory problem. Then it goes on to show that she met and fell in love with this awesome guy (Adam Sandler's character) and they got married, and had a kid who is now 4 or 5 years old, and while it looks just like her bedroom before the accident, it turns out they're actually on a research vessel in Alaska with their daughter. And Lucy cries in amazement as she watches these incredible events of her life unfold in front of her over a few minutes. At the end of the tape she is invited to join her family (including her dad) up on the deck for coffee and everyday she meets her husband and daughter for the first time and absolutely knows she is hopelessly in love with them.

(Lucy meets her daughter for the first time that day)

Ok. Its fiction. But I started to think about what if I awoke every day (not woken by the pitter patter of little feet running to jump on me and steal my blankets, but just naturally woke) to find a video tape of my life. What would be on it? Like Lucy watching footage of her recovery from her accident, I would recoil from the pain of my marriage and divorce, but be overwhelmed by the miraculous birth of my son, hurt again by his autism diagnosis, but overjoyed at our day to day life. And even though the marriage and divorce were more painful than I could bear, they made me who I am today, and I am happier, content, and more satisfied with my life now than I have ever been. Ironically, that all came from making a 'bad decision' instead of being fearful of making a bad decision as I had previously been. (Live in love, not fear).  Yes, a lot of it is really hard, and there are many many tears, but the awesome stuff is SO AWESOME. And there are great moments of cuddles and tickles, the moments I always dreamed of having, I now have. Even today I have spent much of the day just watching my son in amazement; he fascinates me.

So when I realized that I AM IN LOVE WITH MY LIFE, that brought back the glimmer that 8 sleepless and virulent weeks had sapped out of me... and it didn't hurt that my little man happily entertained himself on YouTube all afternoon either.

Love. Not fear.

Connection. Rejection.

In her 2010 Ted Talk, Brene Brown says "Connection is the reason we [humans] are here". I believe it, and yet connection continually eludes me.

Turns out I am not alone in that feeling.

I am writing this blog entry in my art therapy journal from my online Brene Brown art therapy course. (We'll get back to that in a second.) I am writing in my journal at the beach, about 100 metres away from where my non-verbal 5 year old ASD son is playing with his dad... and his 2 year old half- brother, and his dad's second wife (who is inappropriate because of her original relationship to me and my son's dad; but she and my son's dad have a child together now so it ain't going away, and its not my story to tell online). At this very moment, rejection is screaming in my ear and jumping up and down on top of my head. But this rejection has been thrust in my face long enough, that while I feel the constant stab, I have become accepting of the pain. It adds a few clouds to the day, but it no longer ruins it. I only add this because it plays into the vulnerability of what I'm writing about at the moment.

Back to the Brene Brown art therapy course... I am taking it a second time because I was invited to be part of a local group of people doing the course for the first time. Something nagging deep inside me told me I should do the course a second time because there was probably something I missed the first time. The first sections of the course are about Connection and Courage. I focused mostly on Courage my first time through because that's what I needed at the time.

 "We get courage by couraging," Brene says, and whether I wanted to practice courage or not in 2013, (NOT was the case) I had to. And I did develop a lot more courage (though I still need to consume large doses of it every day, so I guess that means I'm still amassing it?)

Three years after the first time I read Brene's book, "The Gifts of Imperfection", the theme that is emerging for me is Connection, which my heart's knowing grin tells me that I quite purposely glossed over these pieces the first time I did this course. I just didn't have capacity to look at this needy part of my life the first time. But I guess I did so well with the courage piece that I now have courage to look at my difficulty with Connection.

Like the research subjects Brene refers to in her 2010 TED talk "The Power of Vulnerability", I can't really tell you much about connection, but I can tell you a whole lot about rejection. And as I bring up this topic with friends who aren't necessarily intimate friends, but whom I feel free to speak deeply with, I hear much rejection from them too. Rejection (or lack of inclusion) from syblings, parents, colleagues, friends, and lovers. Then there's those who are identified as a minority, for whatever reason, who are also not included by society at large.

I have to wonder why so many of us who are confident and capable and loving and loveable LACK close intimate relationships of the friendship variety, (community?) causing us to feel so alone. Brene would probably say its because we're not being vulnerable enough, with ourselves, with our loved ones, with our God.

I would agree. But some of us are working on being vulnerable and are doing really well at it, even though it hurts. Many of my colleagues and acquaintances are clinical therapists, and they know how to achieve relational intimacy and they are doing they're best at it, but they also say they are lacking close friends.

Why are so many of us lacking close friendships then?

 

Why do I hear and see so many people saying,

"I have lots and lots of acquaintances, but I don't really have any friends."

In my city, I think the astronomical cost of living is taking its toll on people's ability to nurture the main thing that gives us meaning in life: human connection. That's a big factor. But that's not the only factor. I'd bet we'd find just as many people in affordable cities who are surrounded by acquaintances and still feel lonely.

I think it might have more to do with the way western societies are all about the individual pursuit of happiness, whereas eastern cultures tend to be more about the wellness of the whole group... the family unit, or even the community. While it might seem like a good thing for an individual to succeed and actualize their potential, the problem that emerges is that when a person fails to actualize, all the failure falls on that one person.[Credit: I'm pretty sure I got this individual vs group mentality stuff either from Richard Rohr, Dacher Keltner, or both.] When group/family wellness is the goal, then when people fail together, they are still together. Its not as devastating... because "connection is the reason that we are here"... so you haven't lost everything. You still have the connection. (Unless you are a character in Game of Thrones, then if the group fails, you all die!)

Which brings me back to my lack of connection.

I would say I am quite good at connection, when its a fairly safe bet; like I am awesomely connected with my son. But his autism prevents him from socially reciprocating. (He is full of hugs and cuddles and tickles and wrestling, but he can't share memories with me, or celebrate holidays, discuss things, etc.)

I am great at connecting with colleagues at work who also want to be connected, but I don't belong in any identified groups, so I get left out a lot.

I am disconnected from anyone I need to be connected to, but with whom it is inconvenient to be connected to. Autism  throws a giant wrench into connectivity because a few autism outburst from the past have basically kyboshed any future connections because people are still traumatized from the previous ones. The result is my son and I are on our own. And it doesn't feel good. I think we need to belong to somebody or something.

I felt this lack of belonging for my son and I already last year. I attempted to fix it by 'building a team' around my son, in terms of support and respite people. I asked about 8 trusted families about being part of our team. They all considered it heavily, and all of them (many with tears) said they're just too busy with sports/church/health issues, etc. More rejection... for really good reasons, but still rejection.

I want to get real about this Connection thing. Because Brene is right. Connection is everything.
      - I really like the beach.
      - I really like the beach by myself.
      -  But after 10 times at the beach by myself, it would mean so much more to share it with  
        someone (friend or otherwise).

Right or wrong, I have given up on people I should be connected with. I am pondering that maybe the way for me to achieve real connection in an on-going way might be more about building my family than building-in play dates. There are others out there who don't even have 1 person they belong to. So maybe we can belong together.

Ironically (or probably not if you're a shame researcher like Brene Brown) it will take a lot of courage if I do proceed with building my family. It's unknown. It's unpredictable. It's forever. So it's scary. But it will also take a lot of courage to continue to not-belong as we currently sit.

YES. We have autism.

I get a weekly newsletter from mindfulness expert, Dr. Rick Hanson (not the Man In Motion) at work. Today's newsletter was called "Say Yes." Essentially it was about the well known concept that suffering lies in the resistance, so when we say 'YES' to life (instead of resisting), we suffer less. It doesn't mean we have to like it, but it means we are accepting it for being what it is. Such as 'Yes, there is nothing good for breakfast,' or 'Yes, I would like a pumpkin spice latte, but I can't afford it.' or 'Yes my desk is covered in mouse poop again this morning, and I am still thankful for my job,' or

Yes, we have autism.

I say 'we' because even though its my son who holds the diagnosis, he and I are all in this together. He suffers in significant ways at the hands of autism, and so do I.

For the first four years I have generally been able to help him contain his frustration and lack of emotional regulation. But he has done a lot of growing up over this summer before Kindergarten, and all of the sudden his rage and upset are moving beyond what I can intervene with. I am starting to get the point where I have to let go a bit and allow him to find his own way through autism.

In the last week my son has bitten two people through the skin, one of them he bit three times (and that person knew better how to prevent the bites, but didn't). He began brutally biting and tearing at his skin with his own teeth when he was prevented from biting others (and he rejects chewy toy interventions). He INSTANTANEOUSLY goes from relaxed to screaming and smacking his head on the ground. And my arms are black and blue this week from his pinches. (The pinches used to be the big problem. Now I think, "Oh, its just pinching. That will just bruise.")

What are all these tantrums about? Could be anything. Like he has brought me his sippy cup to get refilled with water. Since I have to walk to the fridge, get the water out, take the lid off the cup, pour the water into the cup, and twist the lid back on, he is tantruming because I haven't instantaneously supplied water in his mouth. He knows I am getting it for him. But he can't stand the wait. Or the most common tantrum as of late is because he really enjoys a song on one of his tv shows and he wants it replayed instantly. Yes, we have the technology to do so, but he will tantrum unless you replay the same 2 minutes over and over for hours on end. I am not exaggerating. When I once permitted this behavior because I couldn't stand the screaming, I replayed the same 30 seconds on his iPad video for almost three hours. The only reason I could stop was because he fell asleep.

So, to help me survive autism, I have elected to replay the same 30 minute video all day, of which he likes three segments. So he is happy for 5 minutes, screaming for 10 minutes, then happy for 10 minutes, and screaming for the last five. I feel he needs to learn to wait for his favorite parts to come on, even if it doesn't feel good to wait.

In my survival of this cycle I have noticed that when I intervene to prevent his potential injury, such as put my hand between his banging head and the floor, he stops head-banging, and targets his frustration at me by pinching, biting, and screaming all bloody hell at me. Or he does anything in his power to get away and bang his head in another spot. He seems to know I am mostly horrified by the head banging and the screaming, so that's what he does.

Yesterday afternoon I decided just to leave him be. The fastest way to de-escalate him is to leave him alone with some blankets and pillows. As I watched him without being seen, there was very little head butting. There was self-biting, but he wasn't biting through the skin, and it appeared that he wasn't getting the bang for the buck that he was used to. So he tried something different. He tried throwing chairs. He preferred his kiddie chair since he could throw it farther and louder, but he attempted the kitchen chairs too. Since he is only four I doubted one would go through a window, so I let him be. It was quite a cacophony.

I realize that in just a few years I won't be able to let him do this kind of thing anymore, but we are not there yet. I do have an option of creating a padded room in the basement when he grows older if need be. I am hoping he can verbally communicate by then and we won't need it.

In my theme of rest and healing, this doesn't jive. This is why I need to focus so much on rest. But YES, the suffering is found in the resistance. If I want to stop suffering and keep healing, I need to say, Yes, some days it is a mad house. This is what autism is.

And Yes, we have autism.

Day 30: Sleep (The journey toward healing)

Several weeks ago I was chatting with a friend of mine who is also a mental health therapist. This person told me about when they had to take a medical leave because they had so many clients that were suicidal, that they couldn't keep their own head above water. The advice this person gave me is that, "when you do get a chance to rest, you need to go really hard at it. All that stuff that you teach your clients... you need to do all of that and do it intensely."

So this week was the third week of my vacation, and the first week where I haven't been away somewhere, and still had childcare for my non-verbal ASD child. I haven't been able to turn off completely because I still have to be a mom to my special needs child. I still have to take him to his autism intervention appointments 3 times a week. But I have been attacking nutrition, physical restoration, and rest with everything I have. (kind of an oxymoron: attacking rest).

The rest has, by far, been the most challenging. My adrenalin surges are my biggest problem as my adrenalin has been keeping me going for so very long (like being in newborn mommy mode for over 5 years... with a non-cooperative newborn). Yesterday was the perfect example of that. My surging adrenalin (same as a panic attack) kept me up until 11pm. Why was it surging? Because almost every time I have been ready to go to sleep in the last 5 years, I wasn't able to because there was still something critical to be done, or an emergency to tend to, so adrenalin helped me keep going. Now it thinks it needs to kick in every time I get tired because that's what its been doing for me for so long. (And since I am tired most of the time, the adrenalin surges most of the time).

...so I couldn't sleep until after 11pm due to adrenalin. I finally fell asleep sometime before midnight. Then my ASD son had a typical bout of night waking from 1am - 4am, and I had to be up with him to prevent him from kicking the walls or floors and disturbing our neighbours. It also turned out he needed some intense sensory input, so I also had to bear-hug him, squeeze him, kiss him, and give him leg compressions, which are sort of like massage. I'm still super grateful I have an ASD kid that loves being hugged and kissed. And its my favorite thing to do as his mom. But when I've only had an hour of sleep, and I've been squeezing/kissing for an hour, it wears on a person.

Somewhere around 4am I finally got to sleep. Then up at 7am to get my son to his autism intervention appointment for 9.

We were back home around lunch, the babysitter came over, and I headed straight for bed, and fell into a very deep sleep for two hours. When I woke I felt like I was coming out of a coma. Most days adrenalin wakes me. Not today. And wow, was it ever hard to come back to consciousness and functionality. It took me a long time to figure out what day and time it was. I was convinced I had slept for a couple of days.

When I was at family camp last week I got in a 1 hour nap one day there, as well. Both that day and today I feel like I can grasp a small handful of the person I really am again, beyond mommy-robot mode. And that is a giant leap forward in my journey toward healing.

Day 24: What I learned in painting class (The journey toward healing)

I was at a family camp this week. I went for my parents to celebrate their 50th wedding anniversary. But I seriously had my doubts about what kind of rest I would get managing my non verbal, high needs ASD son amidst a camp full of families.  And the only thing worse than not getting any rest, is expecting to get rest, and then not getting any. Devastating.

But I learned something about life (and rest) this week in a painting class I managed to take. I learned that even when it looks like things are totally screwed up, and there is no hope of getting things back to the way they were before, if you keep on going (blending, adding water, adding white, or just painting over it,)  something pretty cool emerges.

While the above image is not the image we were painting, the sky is similar to what we were trying to achieve, and we were surprised by how hard (and easy) it was to do so.

Every day someone in our class would be trying to fix a mistake, and would cry out to our painting teacher, "Sharon! Sharon! I totally screwed it up! Help! What do I do?" And the first two days she gave us specific instructions on how to fix it. After that she said, "Just keep working it. You'll know what to do. You'll think you've lost it all and then all of the sudden the most beautiful thing will emerge."

And it did.

Over the course of the week, it seemed everyone in the class learned that we could either be vexed by our 'mistakes' (or lack of ability), or we could breathe, be patient, come back in a few hours with a different perspective. I think we all walked away with a deeper experience of process (journey) and patience from our painting class.

In terms of rest, I realize that:

a) I need opportunity to rest like I needed opportunity to paint. It doesn't happen 'over vacation', or during 4 hours when I have respite care one day. It's an ongoing project. Last Sunday I couldn't believe we were going to work on the same painting all week. But it took all those hours, and then some. I can't believe its going to take me more than 4 weeks to rest, but as indicated in this blog's subtitle, it is indeed a journey.

b) Its partly a mindset. When there is a four year old screaming bloody murder and trying to bite, kick, pinch, or headbutt either of you, its not a mindset. But after that storm has calmed, there is an element of choosing to be vexed, or choosing to allow flow to happen. And there's nothing wrong with walking away and coming back to it later.

Me partway through my painting.

c) I don't really know what this is going to look like in the end. I'm scared it will turn out horrible. I talked to a therapist friend of mine when I began my journey toward healing and rest and told her I was scared that after about a year of focusing on rest, I might not be better. Then what? She told me what I already knew, that was just fear talking. I could have used the same kind of fear to not start my painting in the first place.

d) To get a painting, you have to start painting. To rest, you have to engage in rest. Just do it. But for some reason its hard to initially engage in it. Similarly its hard to retract. It was often hard to stop painting, but my childcare had run out so I had to go. Same thing with resting. Once I start I could easily keep going, but I have to go back and forth because I still have to be a mom. That part takes commitment and work

Day 16: The Journey Toward Healing. Loneliness

Today is the last day of my vacation. I still have a few weeks left off work, but today is the last day of the vacation I did just for me, that included a nanny so that I can actually let go and rest.

I know my vacation is an incredible success because a couple of times the nanny came to me with a routine issue with my autistic son, and my first thought was, "Okay. What am I supposed to do about it?" And then I remembered that I still have to make him dinner. Or I still have to change his poopy diaper (by choice: I don't feel like anyone else should have to change my 4 year old's soiled diapers.) And a couple of times when the nanny was off I actually forgot I had to watch my son (but remembered before anything disastrous happened). That shows me I did, indeed, turn off.

This afternoon I walked along the beach by our cottage, alone, for a little reflection, and a little good-bye, and I could feel that significant healing had already occurred even in the shortness of this week.

The healing that I felt was that a little of the overwhelming loneliness that I am relentlessly consumed by, had faded quite a bit. Most single parents feel some elements of loneliness, I am sure. I would also venture to say that married parents feel loneliness too. But when my non-verbal, special needs child has been sick most of the time since February, and I was sick for half of that, and every day has been a vicious struggle to survive, and I barely have a moment to text those closest to me, never mind have conversations and feel heard, I start to feel like I am fading. I start to feel like no one sees me. I start to feel like I am not even me anymore. And I don't allow myself to be loved because I am too busy fighting off fear.

A friend of mine, who is also a single parent, but with a typically developed son, the same age as mine, came along on this vacation. We've done a few things together with our sons, but not everything. Her presence has been a big factor in healing some of my loneliness.

 My nanny is also a genius at engaging my son and his friend, and it feels wonderful to me to have another adult to share special moments with as my son develops. That's also a big factor in the development of my loneliness: having no one to share my son's victories and challenges with.

But the real key in healing my loneliness this week has simply been re-connecting with me. Having several hours every day to do what I like to do. This week it was reading, writing, painting, walking, eating, and shopping. It's also been about having time to take in God's love/presence all around me, and in this place, its obvious as Technicolor.

In this place I am aware that I am deeply loved by God around me, and God in me.

At the beginning of this week I read my daily meditation by Richard Rohr. He quoted an ancient saying of perennial wisdom which says "You are that which you seek." I knew then that I was seeking love, and I knew all I had to do this week was absorb it.

So that was 5 days out of 365. The trick will be re-connecting to this place of Love-in-me a little more regularly throughout the year.