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.

 

After the Storm

It all started with a murder back in September... well really it started with a reckless decision I made about a decade ago... so let's say it flared up again with a murder back in September. One that took place about 100 feet from my front door.

Emotional grief and chaos had beaten me up pretty good back in March and April. My divorce became final in the same time period that my son got diagnosed with autism. And shortly thereafter I had to take a stress leave from work because I just couldn't keep up with everything.

I needed some space to breathe.

Some time to figure out which way was up again.

 

The real outcome of my leave, however, was that I discovered that I am comfortably busy

 just being the stay-at-home mom of a 3 year old with autism.

I can keep up with fitness, spirituality, and a social life if I don't also have a full time job
 (but I have to pay the bills).

But September brought my return to work, and it only took a few weeks for a storm to start brewing, and a looooong drawn-out storm it was.

Here is a brief storm summary (in addition to the regular challenges of single parenting a 3 year old with autism).

• September 19 - murder across the street. Didn't sleep well for a few nights.
• First week of October - my son's third birthday, which happens to fall on one of the biggest/busiest days of the year at work. I am beyond exhausted by the weekend. (And his birthday party was still awesome! Camping theme. Here is the cake:)

• Early October - I realize I have some alarming symptoms that could indicate cancer. I am stressed every moment of every day with the possible ramifications. Since it takes weeks to get appointments with my family doctor and get other information, I live with intense fear every day.
• Mid October, my symptoms get serious enough one night, I wonder if they are life threatening and spend the night in the emergency ward. Though my symptoms appear scary, they are not life threatening, and I have just had a panic attack.
• Last week of October:
• I receive some life-altering news about my ex and his life, but the news doesn't come from my ex. I realize I have not been receiving all the information about the activities of my non-verbal 3 year old when he is with his dad. I become extremely concerned about the safety of my son.
• I get the test results back from my concerning symptoms. Turns out its not cancer. Not life-threatening. Relatively easy to remedy I can exhale.
• I get a phonecall from a housing co-operative that I had applied to back in July. They want me to come in for an interview immediately. Within 48 hours I have an interview, am offered a dream 2 bedroom townhouse that will be the family home my son grows up in, in a beautiful, safe neighborhood, close to my work, that I would never be able to otherwise afford. I accept the offer for the townhouse and give my 1 month notice to my landlords. We are moving. To our dream house.
• First week of November:
•  I have to make a very difficult decision and am engulfed by fear about how my ex will respond to my decision. I consult with security experts. I inform my ex and he responds peaceably. Once again, some sleepless nights.
• I also start packing up my home.
• Second week of November:
• My ex's response flares up. We have to arrange an immediate mediation.
• My son's autism worker has to quit. I am expected to advocate for her, and I want to, but I can't with ex issues, moving, recent health issues, and my full time job. Its amazing that I can even make it to work in the morning.
• My ex and I make a holding pattern plan that will stabilize things in the short term.
• Third week of November:
• I receive more jaw dropping / face-slapping / gut kicking news from my ex.
• I get the keys to my new place with the condition that I accept it as is (dirty, and in need of painting and some repairs).
• I drop a huge chunk of change on some new appliances, paint, and labour.
• My son gets new autism workers (Behavioural Interventionists). I feel bad that I don't even know who these people are, but right now I just don't have time.
• I am fearful there is too much change going on for my son. I cry at the thought of him not understanding that we are moving to a new home. His current home (a basement suite) is the only home he's ever known. And he loves his home.
• My son comes down with a cold.
• Its one of my busiest times of year at work.
• Last week of November:
• Every spare moment I can find is spent cleaning and painting the new townhouse, to make it as comfortable and familiar as possible the day my son and I move in.
• Every other moment is spent packing and cleaning the old place.
• My son still has a cold and doesn't sleep well the whole week (so neither do I).
• Last day of November: Moving Day. 2 hours of sleep. Barely ate anything. My son was happy to see objects that he knew, but still tried to 'go home' to the old place. He sleeps in my arms that night, clutching closely to me. I think we were actually clutching onto each other.
• First week of December
• within 24 hours, my son figures out this is our new home. He is happy.
• my son gets pinkeye. He is in a fair bit of pain.
• unpacking takes a long time.
• Second week of December
• my son's cold is still going and I have been up with him numerous nights with very scary coughing fits (That's the part I hate the most about single parenting because I get really scared). I take him in to the clinic and discover he has an ear infection AND bronchitis.
• trying to finish up painting. Unpacking.
• my ex forces me into a surprise situation that is extremely uncomfortable. Takes me a day or two to emotionally recover.
• Third week of December
• Christmas shop? Christmas bake? Paint? Clean?
• sort out inappropriate surprise situation with ex
• my son recovers with the help of antibiotics
• Fourth week of December
• extremely awkward and dreaded Christmas situations with the ex come to pass. I survive. I am not a saint, and I didn't want to be a saint. But I am happy with who I am and what I put forward. Despite it all, I have a good Christmas.
• January - back to work, bills, and monitoring changes with my son's therapy.
• I get out to explore some of the trails and shops close to my beautiful new townhouse.

And with the arrival of the New Year, it seems that particular storm has passed by. Peace and calm have arrived (for at least today), and I am taking it all in. I am learning to embrace it all. In my daily meditations from Fr. Richard Rohr this week, I read that to love God is to love everything, for God is in everything. I know I'm definitely not "there" yet (I don't love everything), but maybe I'm leaning in that direction? Maybe I'm getting better at acceptance?

A few friends have commented on a difference they've seen in my spirit since we moved. There's a peace there. I sense it. And I don't know particularly what it is, except to say that its LOVE. Love from God. Love from family and friends. Love from my son. Love from the incredible nature that surrounds our new home.

 Love lives here.

This is my favorite song these days.
The general gist indicates a romantic love, but could certainly be interpreted into love of life.
And miraculously, that's where I emerge from the storm - in love with life and my son, still struggling most days, and glorying in the messiness of it all.

Sober - Little Big Town

 

I celebrated Thanksgiving (eh!) with my family today.

A few days ago I started thinking about what I'm really thankful for. If I even think about how thankful I am for my son, I start bawling immediately, so lets not go there. Same with family members, health, etc.

But there's something I have been thanking God for every day since the day after labour day.

Heated seats.

That's right. An extravagance for this menno girl, for sure. But they only had 1 manual Kia Soul on the lot when I bought it in April. And it was in black (which I wanted). And it came with heated seats.

I am usually achy in the morning. My chiropractor says its because I never fall into a deep enough sleep to allow my muscles to repair (pre-schooler with autism of the I-don't-sleep variety). And I'm usually panicked and late and utterly at a loss every morning, wondering how I will possibly get thru another day. And before I'm at the bottom of the driveway, the heated seats kick in, like a little love. Warming me. Holding me. Giving me hope that even if I don't make it thru the day, they will at least get me delivered to my office (where my day launches into a life of its own).

I've been reading some hysterically funny notes from single parents of autistic kids who are trying to date. It's hysterical because its so impossible. The life of a single parent of an ASD kid is completely unmanageable if the person also has to hold down a full time job... And then fit in dating, and an
actual developing relationship.... Well. They tend to develop at a snails pace because there is no time, and often fizzle out because they move so slowly, they lose momentum.

Heated seats might better.
They don't need anything from me.
They fit into my commute.
They make me feel good.
 They support me in whatever I do.
They are there for me at the end of a long day.
They sing with me to my fave song "Sunny and 75", making me feel like it really is 75.

My tushy and I thank you, heated seats. There is no one else like you.

(And I only had time to write this because I did so while sitting on a hard white pre-school Ikea chair beside the bathtub while my son had one of his marathon baths).