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.

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.