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.

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.