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.

Day 13: BEing in the journey toward healing

Whatever ground I lost while being sick at the start of my journey toward healing and rest, I regained immediately upon arrival at our vacation cottage in Coupeville, WA. Everything about this place disarms any stress I was clinging to, just to maintain my usual state of being. Last night I just sat on the deck and stared at the view. That was about it.

Slept well. This morning I got up, got my son breakfast, and then we all kind of sat around and stared at the view. I said to my single parent friend, "I've only been up for an hour, but I feel sleepy again already." She said, "That's called relaxing." I said, "Huh."

Then we went to a park, got some food at the grocery store, came home where I painted a bit, went for a walk, and suddenly it was the end of the day. I can't believe how fast the day passes when one is relaxing.

Today would best be described as simply BEing, or being mindfully present. I was very aware of my presence interacting with almost every other presence in everything, with every step I took, dialed up to 11 (meaning every step I took, something else blew my mind). A few of those things were able to be captured on screen, and I hope they allow you to BE in the moment.

 

 

 

 

All was not just sweet smelling roses, however. My sitter helped with my son enormously. Autism still won 3 battles today that I just wasn't interested in fighting. The hardest was the last (bedtime). My blood pressure probably went up with the 40 minutes of screaming before sleep because he was tired and couldn't get himself to sleep. But now that he is asleep, I can watch the sunset sky and the twinkling lights across the bay.

Day 9: Muddling in the journey toward healing

Maybe not quite lost, but I definitely feel like I am going in circles. I was able to start resting on Day 1 (July 1) because it was a holiday in which I had nothing planned, I had some respite from my son that day, and my son (non-verbal 4 year old) finally got better after having a low grade fever and other unknown symptoms for the last two weeks.

(Us on one of WAY TOO MANY sick days this year)

About Day 4 of my journey toward healing, I came down with a swollen stinging sore throat, probably the same virus my son had. This is the nastiest, longest sore throat and ears I have had in a very long time. From what we know from 3 doctors visits with my son, its a viral ear/throat infection. I just pray its what he had because if he is still going to get what I have now, I have a hellish couple of weeks ahead of me.

So needless to say, rest is difficult when you feel like crap. In fact I've heard a number of doctors say that if your body is in pain (physical or emotional) it makes it pretty difficult for it to heal itself. So part of me kind of feels like I'm back to square one again... or just waiting for this virus to pass so I can approach square one again.

And this is pretty much the story of my life as a single parent of a high/special needs child, trying to take care of myself.

The one thing that has caught my attention this week, is a weekly JOT (Just One Thing) I get from Dr. Rick Hanson (not the Man in Motion), one of the world's leading experts in clinical mindfulness and positive psychology. It was a post called Get Out Of The War. As the title suggests, it was about removing yourself from toxic situations, toxic thoughts, or any battles that you lose energy to, or battles that cause you (unnecessary) pain.

So while I am not resting, I am paying attention to the thoughts and situations where I am losing my peace of mind. The battle with my son's autism is the obvious one. 'The suffering is in the resistance' is one of my current mantras, so several times I have tried to let go wherever I was finding resistance to my son's autism, but this is a laughable effort at best. Autism is a ruthless, relentless, stalking predator, particularly when there is only one caregiver, and this morning was a perfect example of how futile 'letting go of resistance' is. The ride to the place where my son receives autism intervention is about 15 minutes long. 5 minutes into the ride my son figured out where we were going, and he screamed bloody-hell/someone-is-murdering-me/my-eardrums-are-bleeding for the duration of the trip. That's a battle I have ZERO control over.

The one battle I have let go of is the tension my heart feels at never achieving the house I really want to have. I still love my house but I've had to come to terms with the fact that my living room is my son's play room, complete with daily destruction. It will never be my place to let go. It will never be a place I can have ready to receive visitors. My kitchen floor will never ever be clean. My son might be the world's messiest eater, intentionally spraying crumbs with total glee, about 5-6 times a day. I have to tell visitors to keep their shoes on because it really might be cleaner outside than in. I let go of the master bedroom as my son has been so sick this last year, and sleeping in my queen bed with me, he has now assumed that is his room and will only sleep in there. I now sleep in his single bed, which I bought brand new for him this past Christmas. Fortunately, I spent the big bucks on it and its really comfortable. Having less room in bed is worth it not to be woken by a knee to the boob, a heel to the nose, or 45 pounds sailing through the air landing on my sleeping body.

And I am still trying to think of other ways to get out of other wars I don't need to be expending energy into.

This week's JOT from Rick Hanson talked about finding peace. He referred to four levels of finding peace. I remember the last one was about connecting to the Something Greater in life, which I already am. But the first one is probably the easiest for me to implement, and might be providing me a level of rest: it was about celebrating and dwelling on good accomplishments you have achieved. I can do that. And have done that.

 I feel proud of the family I have built with just my son and I.

I feel like I am a good mother most of the time.

I feel like I have weathered some pretty crazy shit and come out the other end wiser, stronger, and even more at peace.

 I feel good that I am able to pay my bills.

 I feel good that I am growing my own veggies in the garden.

 

I feel good about the community I found to raise my son in.

I feel good that I have increased my veggie intake by 90% and decreased my sugar intake by 95%.

I feel good that I take my son out to experience nature as much as I possibly can.

And I could probably keep going with a long list of simple thing... things that some might not consider accomplishments, but these things do give me a sense of peace. And in that peace, there is some rest.

Day 2: The Journey Toward Healing

Today is the second day of my journey into rest and relaxation. I have been talking about doing it since last Christmas, but there literally hasn't been a time since Christmas that I was able to let go, even for a day. I am talking white-knuckling it every day AND night (and I literally wake from sleep white knuckles hanging on to each other for dear life).

I spoke in another post about how moms of kids with autism (not specifically single moms, just moms) have stress levels similar to soldiers in active combat. I get that because there is little ability to predict when the next episode/attack is going to be, who will get injured and how, how long it will last, or how bad it will be. Typically there's a few a day. Sometimes there isn't one for a while, and then you wait to be ambushed. And you will be. So whatever you do, don't relax.

Much of the time, significant clean up is required after an episode. And the episodes also tend to cluster, so while you are drooped in defeat, cleaning up from one devastation, the enemy (autism) launches another attack on another front.  Perfect illustration: My non verbal ASD 4 year old pulled almost every one of his 100+ books off the shelf the other morning. As though to add a garnish on top of the mess, he also emptied his Mega Blocks and race tracks top of the books. The sitter found me working up a sweat trying to tidy things for her arrival, when we suddenly heard a CRASH out on the deck where my son had intentionally smashed a glass bottle. His delight was quite apparent and he didn't understand why I ran at him yelling, STAY THERE STAY THERE. He wanted to jump amidst his new smithereened creation, but I was able to hold him in place while the sitter got shoes for all of us. Then I got to go to my job (phew!). The following evening was relatively pleasant, watching (every second or he will take off) my still-diapered son playing in the sprinkler. I took off his wet clothes and shoes and left him in his wet diaper while I went to answer the doorbell to discuss an urgent maintenance matter with my neighbor. After a 5 minute conversation, I ran upstairs because I couldn't hear my son. What I found was  a kitchen smeared with diaper gel... he had broken through the protective barrier in his diaper, heavy with sprinkler water, and smeared the gel everywhere through the kitchen. Then I took him to the bathroom to wash him off in the shower and I got screamed at, head-butted, and bitten. I could go on, but you are getting a snapshot of what it looks like.

Add on top of this the fact that my 4 year old has been sick almost non stop for the last 5 months. This means 5 months of sleeping with me, or waking in pain, or crying etc; 9 trips to Children's ER, 6 of them in the middle of the night. Not only will my body not allow me to fall into a deep sleep, but it is ready to slam me with adrenalin to help me deal with whatever the mid-night screaming is about.

And thus my problem now arises: I HAVE TO RELAX if I want to survive to live another few years. But my body is coursing with so much adrenalin, when I sit still mid day, my whole body is buzzing like a bee. Like this bee in my garden as I started to write this today:

Bad picture, but I had to snap quick to capture the moment. The bee actually irritated me because I am working so hard to stop the buzzing (adrenalin) in my body, and the bee's buzzing was amplifying my buzzing.

So yes, Day 2 of my relaxation journey, and it will be a long journey. And apparently uncomfortable. Its tough coming off of 4 or 5 years of solid adrenalin.  Prescribed medication takes the edge off. But what really helps is meditation. Twice today I turned off the tv and meditated for about 5 minutes each before my son needed something from me. And I felt better. But its surprisingly hard to let go. And my adrenalin has served me so very well for so long. Its gotten me though dozens of experiences where many have said, "I don't know how you do it." Neither do I because adrenaline keeps doing it for me.

 I don't have anything wise to end this post off with except to invite you along with me on my journey back to calm. To center. To stability. And the very fact that I've created another post here tells me that my first step toward healing has already begun.

I Cry In Public

And its starting to happen more and more.

Strangely, I am kinda okay with it.

I mean, if I could wave my magic wand it wouldn't happen. But knowing WHY its happening somehow makes me okay with myself in the midst of the spectacle. The hard part is putting other people at ease over it as they all rush to find out what's wrong, essentially trying to ebb the tide of my unsightly emotion.

What's wrong? Autism is.

As a single parent of a 4 year old with autism, I would give myself a grade of B+. (Not 'A' because I am bad at asking for help. If I was doing this perfectly I would have a support team constantly around my son and I).

A few times now, there have been extremely stressful situations involving my son and medical personnel, or somewhere we have to wait, or somewhere he doesn't want to be, or NOT somewhere he wants to be... where my son has thrown a giant fit of epic proportions and I have had to

• contain it
• deal with it
• survive it
• treat it
• outlast it
• help others recover from it,
• etc

The problem is my son has no ability to self regulate. It is soaring ecstasy or utter devastation. If he experiences either of these extremes, its hard for him to find the balance in between again.

How I think this differs from an average 4 year old fit is that he doesn't have the self ability to recover, and he is truly suffering. He doesn't understand, so I can't explain it to him. I can see the devastation and suffering in his eyes. Yet there is no other course of action I can take except to ride out the storm with him.

As a parent I think I might take the bigger brunt of the hit. Or maybe its because I don't live in the present, so I am still living in the trauma a couple of days after the fact. Maybe its because I am more acutely aware of the suffering, and am helpless to relieve him of it.

Maybe its because as a single parent, I don't usually get any recovery time. So when my child has recovered 2-12 hours later, I am still 'on' making sure he remains stable and doing everything in my power not to set him off again... not resting and recovering from the trauma I suffered, watching him suffer.

You may or may not be acquainted with grief. If you know it, you will know it will rear its ugly head at the most inopportune time, if you don't make appropriate time for it.

Well I don't have any opportunities to debrief my sons varied, sporadic, unpredictable trauma's, and subsequently the tears come out really inappropriately:

• at work when someone asks "how's it going?" (they are learning not to do that)
• at a salesperson who is trying to upsell me, and I don't have the energy left to protect our limited income, so they just get tears instead of intelligent refusal.
• at my poor mother who is just trying to make plans or help, but one more question is making my brain explode in the form of tears.
• at the news that I still have to stop at the pharmacy before we go home... tears.

I would be headed straight to my doctor for depression, but the thing is, this is purely situational. It IS trauma. But antidepressants aren't going to fix any of it.

Earlier this week I reposted an article on Facebook that cited that mothers of kids with autism (just moms in general, not expressly single moms) have stress levels the same as soldiers in combat. I don't think they put soldiers who are in active combat on antidepressants. I would imagine it could affect their ability to fight.

Same here.

So in the meantime my body's way of dealing with the trauma of the battles is by releasing the trauma through tears when it needs to cry. (Side note: tears of suffering are a completely different chemical composition that lubricating tears) And that's why I'm kinda okay with it. I trust and respect my body to know what it needs to do.

Its all the other people that are freaked out about it.

Sorry! Its just autism.

Croup, Hot Paramedics, and Me

So my ASD non-verbal four year old woke up gasping for breath in a croupy kind of way about two hours after going to bed last night. Then he started the croup cough with the gasping, then he started ASD screaming because that's what he does. Within five minutes of this beginning, I had him outside in the cold night air, and I was on the phone with 911. I am pleased to say the firefighters and paramedics were there within 5 minutes. (I am embarrassed to say that when talking to the 911 operator my first comment was "My baby is having trouble breathing". "How old is your baby?" "Four."  I am imagining my embarrassment when I open with the same line in 15 years).

 

 

The paramedics could easily hear my son's croup, and the lead paramedic, (who I couldn't help notice was kind of hot... not the hottest guy I've ever seen, but hot enough that I noticed he was hot in the midst of crisis. Obviously a body builder with bulging biceps and a clear V-shape... I digress) immediately determined that my son needed to be taken in to the hospital to get the croup treated. Then he lifted my lil tantruming, gasping, coughing, punkin pie out of my arms to carry into the ambulance, almost dropping him at first because he is really hard to hold if he doesn't want to be held. When the paramedic figured out how to carry my son, he walked away with more confidence, and, being a single mom, it twigged something in me, seeing my son easily carried away by strong compassionate skilled arms. It also felt like a huge relief knowing at the moment he was in caring capable hands. I got a rare, brief, sense of relief (for about 60 seconds) absorbing that for even a few minutes, I am not the sole human responsible for my little human's life. The relief struck me so hard because I'm not normally cognisant of that extra, relentless weight that single parenting brings.

They took the car seat out of my car and transported my son to the hospital in the ambulance, in his car seat. When we got to the ER (I followed in the car), and had him assigned to a bed, the hot paramedic couldn't figure out how to get my son out of his car seat (on the stretcher) and into the bed... because if my son doesn't want to get out of his car seat, you'd almost have to break his bones to get him out. The paramedic tried the fun approach, the quick distraction approach, and finally got my son out, only because my son allowed it. But then my son unleashed his full wrath on the paramedic who glanced at me for some guidance. "Carry him like a log," I coached him. He did, and we got my son transferred into a crib (which he liked... always been attracted to fences and firm boundaries).

As they were departing for their next call the hot paramedic looked at me and shook his head saying, "Man, that kid is strong for a 4 year old! You must be incredibly strong if you have to do that all the time." And then they were off before I had a chance to register his comment

In the end, my son is fine. We were released 3 hours later with some good doctor coaching on the complexities of determining emergency with a non-verbal child with little self regulation ability. And affirmation that I had done the right thing, and because he is non-verbal, its always better to be safe than sorry.

Then I had to figure out how to carry out my son, his car seat, his backpack, and my purse, across the street to where our car was parked. I did it by carrying my son on my shoulders, the backpack on my back, my purse slung across me, and the car seat in one hand. I felt proud and competent that I was able to do that.

And that's really what I got from the whole experience... a sense of pride in myself, that I asked for help when I needed it, even with the potential embarrassment of being one of "those people" who call an ambulance for a runny nose. (And I am really, really bad at asking for help) I am learning to trust my gut feelings more and more and just drop what I think other people might be thinking of me.

I bought this inspirational wall hanging when I moved into my current home last year.

 I think I bought it with hope in mind. I look at it and read it over all the time. And last night I realized that I have become everything on that sign.

The Bench (I Survived)

It was a rare morning.(Autism Mommy was starting to lose it because while she was on vacation, autism doesn't take vacations, and things had been drifting towards worse instead of better. So I hired a teenager to help take the edge off for 48 hours. Her job was to watch my ASD 3 year old in all the  in between time, (side, side note unrelated to the rest of this post: she was as exhausted, possibly more exhausted than I, just keeping tabs on him.))

But yes, a rare morning. Mid summer. Decided to spend the morning in one of my favorite staycation spots: the fishing village of Steveston. I dropped my son and the sitter off at Steveston's FABULOUS playground/waterpark, and then made my way up to Starbucks to get a coffee before strolling along one of many wharfs, walkways, and docks in the village. I happily sipped on my iced soy latte, felt the salty ocean breeze lift my freshly cropped locks, and stood at an intersection that offered three different directions I could take my peaceful walk. My heart bubbled with delight at my opportunity to walk/ drink coffee/ ponder on my own, and the summer morning was picture-book perfect.

Then suddenly I found myself THERE.

Confronted with that place.

 

That bench.

Where I sat with my husband on our last anniversary together.

 

 

I was 8 months pregnant.

And desperately trying. So hard. To enjoy our anniversary.

And it was hell.

Barely able to touch each other.

His disdain for me palpable, though he tried too.

Conversation was strained and sparse. There was nothing left to say.

 

 

I am gripped by the memories that go with the view from the bench, remembering the angle of the sun that day, glistening amongst the reeds, being absorbed in the horrible beauty... horrible because that was the first time I looked straight into the eyes of Divorce. I was paralyzed by fear. Paralyzed by the unthinkable. That bench was where I sat the first time I honestly considered that our 5th wedding anniversary could be our last.

 

And it was.

 

And here I am, 4 years later, almost to the day (and almost equal to the length of my marriage). I am on the other side of the Valley of the Shadow. I have learned to accept love from everywhere around me. I have accomplished far more than I ever thought I could (or wanted to). I have an adorable son who exhausts me beyond exhaustion, but also delights me with his antics and who he is.

 

I walk out on onto the adjacent pier and notice there is a totally different view from there - from beyond the bench. From where I stand today.

 

 

 

I feel the warmth of the sun, breathe the salty air, feel it caress my skin, and I realize that I survived. And life is good. Challenging beyond words, but very, very good. As I stand in the moment, in the presence of the river, I think of the death in me that occurred in that spot. And all the life that has magnificently erupted from that death. I think of the role of the river. There is a lot of death involved with the Fraser River - fish, industry, murders, drownings. And there is a lot of life - fish, water for all forms of life, a means to make a living. The river also moves and changes things, whether we want it to or not. It just does what it was created to do. Slowly. And with tremendous power.

 

Death began here, and life has resulted at a whole new level. The biggest sign of life for me, is that I didn't even think of that danged bench until I was right on top of it. I was just doing what I love. And it was an interesting experience for me to hold the dissonance of grief and joy in the same moment.

 

I practice a Pema Chodron teaching I recently read: breathe in the pain deeply, and exhale joy, love, and peace. Transformation.