Tag Archives: stress

The Bears in the Park: Anxiety and the Autism Parent

????????????????????“Worry is the thief of joy.” – Unknown

I read with interest the other day a post by psychiatrist Dr. Gail Saltz, “This Is You on Stress.”  Being stressed out all the time, I’m becoming increasingly aware of its effects.  Dr. Saltz says stress is an evolutionary thing, a fight or flight response triggered by a perceived danger.  In dangerous situations – such as the possibility of encountering bears in a park- it keeps us aware and can save our lives.  The problem, she says, is when you are removed from the danger but the fight or flight instinct is still going.  That kind of anxiety is harmful.  She goes on to suggest some strategies for breaking the cycle of unhelpful stress when danger isn’t nearby. I thought about that for a while and how to use those strategies to stop stressing and calm down.   I thought about those bears in the park.

And that’s when I realized.  It’s no wonder parents of severely autistic children are increasingly being diagnosed with anxiety disorders, PTSD, depression, etc.  It’s not because of their children.  No, our children give us just as much joy as any others.  It’s because there is rarely a time when you aren’t in the park looking around for all those bears.

What and who are these bears?  There are many.  Elopement, bullying, failure of school districts to provide an appropriate IEP, medical and dental appointments, unfamiliar situations, loud noises, lack of autism awareness, lack of autism acceptance, loved ones who don’t get it, judgmental stares and comments from strangers, inaccessibility from grocery store carts to Disney World, respite care, insurance battles, lack of appropriate housing for autistic adults –and on and on.

So we rarely leave that park.   And we stand – fight or flight response at the ready – clutching the hands of our children all the time.  While trying to live our lives in all the necessary ways.  Meeting the needs of other children.  Nurturing our marriages.  Paying bills.  Working.  Caring for older family members.  Taking care of ourselves – which, like this list, always comes last.  But we do all of these things while anxiously looking around, listening, and facing those bears when we encounter them.

I’d like to follow Dr. Saltz’s suggestions.  I’d like to try meditation, thinking myself calm, and reminding myself that I’m out the situation.  Except I’m not.  I don’t have the luxury of letting down my guard.  Because if I do, the bears are still there.  My child will not receive an appropriate education.  He may be traumatized by people not trained to work with autistic children.  Someone might forget to latch a door.  A door within minutes of busy intersections and bodies of water.  He might be treated as a disorder and not a child.  No, the only time I can relax is when he is safe in bed and the house alarm engaged.  Even then fears of my own mortality (who will take care of him?), his education, his health (feeding issues), and his future haunt me in those witching hours of worry.

The problem is these fears aren’t unjustified.  My anxiety isn’t occurring in the absence of danger.  These dangers are real.  Because this world is not ready to welcome my son.  A son who will one day outlive me.  A son whom I fear will not – if needed – be cared for by those with good hearts and a desire to allow him as much independence as he is able.  A child whom – in the wee hours of the night – I lie awake envisioning as an old man.  An old man – perhaps with no family of his own – lying in a bed and taking his last breaths with no one to hold his hand.

Yes, those bears are all around me.

I don’t want stress to win, but it’s ever present.  It steals from me sleep, laughter, and peace.  Joy?  It’s fleeting.  Found in bits and snatches – and always bestowed to me by my children.  Yes, it’s there.  But it’s often stolen by the thieves of anxiety and fear.

And in my darkest moments, I fear that lack of joy is turning me into a bear.  Someone who sometimes fails to appreciate the little things.  Someone who will fail to pass on joy to my children – who deserve that in their mother.

Some talk about a national autism plan.  Do we need one?  Yes.  Should it resemble any of the depressing and misleading suggestions we’ve heard so far?   No.  But we must begin to address the needs of children, adults, and families like mine.  We must begin to teach our citizens, our schools, our medical personnel, and our law enforcement how to interact with autistic persons.  We must learn new ways to teach, engage, employ, and live amongst those who experience the world differently.  And we must begin to plan for the futures of the most disabled on the spectrum.

Until then, I remain perpetually on watch for bears.

If you liked this post, you might also enjoy “It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset.”

 

 

Reunited and It Feels So Good: Me and My Inner Girly Girl

No, this isn’t my actual closet. But wouldn’t it be pretty if it were?

profundity: noun.

1. intellectual depth, 2. the quality or state of being profound or deep

I have a confession.  I – originally a very girly girl – have been walking around for some time looking awful.  Not because I don’t have the slightest clue what is flattering or cute.  But because, for so long now, I just haven’t cared.  I have this syndrome some chubby girls get in which I tend to procrastinate buying clothing out of the  desire to buy them “after I lose some weight”.  Intellectually, I’m aware this isn’t a good attitude.  I’m just saying it happens.  Some of us visualize the ideal “me” we want to be and don’t want to acknowledge the needs of the current “me” we are.

I did something shocking in recent weeks.  Shocking and so unlike myself that the word “profundity” comes to mind.

I threw out my entire wardrobe and bought a new one.

It was the realization that someone might get desperate enough to nominate me for What Not to Wear that made me realize I needed a change.  Although not extreme in the kooky or sleazy sense, I’ve looked tired for ages and in dire need of new duds.  But my illness earlier this year forced my hand.  I had been hearing people tell me it looked like I was losing weight, but thought it was maybe 5 or 6 pounds.  Turns out, it was 34.  And, following the death of my father in May, I lost even more.  My clothes – which were limited in quantity to begin with – were falling off of me.   (I’m still thankful it was just my BFF with me when I had that embarrassing tankini malfunction, but that’s a story I refuse to ever tell you.)

So, with a goal of mix and match separates and adding some color to my style, I headed out with a couple of friends and a 30% off the entire store coupon from Kohls– including sales/clearance.  In the spirit of What Not to Wear – though without the $5,000 budget and designer clothing stores – I shopped from the skin up.

I was shocked to discover stress had eaten two entire dress sizes off of me in the months preceding and just following Callum’s diagnosis and the death of my father.  Typically, stress adds weight to me — which is how I got chubby to begin with.  (Peanut butter fudge is a most efficient caloric source, you know.)  But that was before Callum.  Worry for one’s child is a whole different kind of stress.  One I never imagined back in my single days when I thought I had problems.  The loss of my daddy just magnified it.

Instead of gaining weight, it just melted off.  And, though ready for the runway I’m decidedly not, shopping was a lot more fun than 40 pounds ago.  I like the clothes out this season so much more than a couple of years ago.  And I realized it was time for a cool change. I picked things I liked, with fun colors, and bold prints.  I chose dressier clothes, so that I wouldn’t be as tempted to schlep around.

I bought a whole new closet.  And, since I’d done all that, I went and had my hair colored and highlighted. Then I pulled out my rarely-used-of-late makeup brushes and makeup and dusted them off.  And now I know a little how those folks on WNTW feel when they return for their “reveal”.  People were thrilled to pieces.  My coworkers got excited.  My boss was beside herself.  And my little girl, who I confess has rarely seen her own mama dress up, was mesmerized and told me I looked beautiful.  Another “layer of understanding” if ever there were one.

No, not all mothers of autistic children are sloppy dressers.  Many look fabulous.  It wasn’t autism’s fault.  It certainly wasn’t my son’s fault.  Autism didn’t make me stop trying.  I did that.  That’s on me.  I avoided shopping and stopped looking cute long before my son came along, so the only cause for blame is my own rather listless reaction to stress.  Yes, of course there are medical labels for such phenomenon.  But, I’m too busy to go seek one.  And the end result is the same regardless.  As with our children, call it what you want.  The question is always, “What are you going to do about it?”.

I, for one, am going to do better.  Not because I view looking well as a noble characteristic — but because I see it as a necessary one.  I cannot just fall apart or walk around looking as if I might.  I have to enjoy my life – or I won’t be able to enjoy him as much as he deserves.  I, like female shoppers in dark parking lots, have to look the part of someone who could take on the world.  Because I really do have to take on a world.

His.

So, there you have it.  My new clothes.  My new return to feeling girly.  My new determination to not forget myself again.  I never thought the clothes hanging in my closet were symbolic in any way.  But they are.  And, though my new assets are depreciating ones, I’d still say they are a heck of an investment.

FYI:  Later in the day that I published this post, I was contacted by a very nice lady affiliated with Kohl’s (and also has autism in her family) who wanted to wanted to offer my readers a discount they can use online.  It is a 10% off code that can be stacked with other department discounts.  You can use this code until October 24th.  UBLOGTEN

And, no – for you suspicious types, I am not affiliated with Kohl’s in any way myself, nor are they paying me for linking to them or sharing the code.  I just dig their stores and thought you guys might like the discount.  :)

A Lesson in Gratitude

A little over a month ago, just prior to Christmas break, I went out to the Bloodmobile parked in our school parking lot to give blood.  They are usually thrilled to pieces to have O- walk in the door, but this time they turned me away.  After passing my iron test, I flunked my blood pressure big time.  160/120.  I, quite naturally, had a pounding headache (that I’d had for 3 days) and my heart was racing.  This isn’t normal for me, so I chalked it up to stress, but made a mental note to call my doctor.

Later that day, I had yet another person make a comment about me needing to buy some more clothes from “all that weight” I was losing.  I kept telling people that I wasn’t on a diet, and may have lost just a few pounds due to being so busy.

During Christmas break, my back went out and just didn’t seem to be able to get it back to normal.  Right about that time, I also began to have intermittent pain in my right side.  And then two days before returning from Christmas break I came down with what I thought was just another case of bronchitis.  I returned to school on a Tuesday, stayed two hours, and went home to crawl in bed.

The next day, I had a scheduled doctor’s appointment (that I had made following that blood pressure incident).  Imagine my surprise when the nurse weighed me and told me I had lost 29 pounds in just a few months.  And I hadn’t been on a diet.  The doctor walks in and starts asking about the weight loss, the blood pressure, the abdominal pain, etc.  And then he discovered that I was tachycardic, with a heart rate of 122.  After taking in this assortment of symptoms, listening to my lungs, doing an EKG, and hearing me confess to being terrified of pancreatic cancer (following the death of my stepmother), he ordered up a mess of tests.  At 38, cancer isn’t the first thing a doctor worries about in a patient, but, with my symptoms, he spent a lot of time with me and patiently detailed a long list of possible concerns.  Among them were lupus, adrenal tumor, cancer, thyroid problems, and plain old-fashioned stress.  Having watched someone I love die of pancreatic cancer, that possible diagnosis is a real terror for me.  This somewhat irrational phobia combined with the doctor being clearly concerned about me, I must have had the deer in the headlights look about me.  He offered me a few days of Xanax to keep calm until the tests returned.  Not being one to normally like pain killers or sedatives, it’s a statement to say I readily accepted them.

I thought I was being relatively calm until I approached the front desk.  That’s when the nurse informed me that the doctor was referring me to *Dr. Smith.  At that point, I heard no more and reason flew out the window.  *Dr. Smith had been my stepmother’s oncologist prior to her death.  I walked out to the car where my husband and kids were waiting, petrified my children might not remember their mother.  I called my best friend, a physician in Vermont, who proceeded to tell me to calm the heck down and assured me over and over again that it doesn’t work that way.  “We diagnose cancer first.  We don’t send patients to oncologists out of suspicion.  You heard wrong.  Call back.”  The next morning, after receiving a call from *Dr. Smith’s office setting up an appointment and panicking all over again, we called my doctor — only to discover that there are TWO *Dr. Smiths in our small town and that I would be going to see the gastrointerologist, not the oncologist.  Feeling stupid and enormously relieved, I went to do my blood tests and get my chest x-ray.

I had calmed down again and was lying in bed the next morning when the nurse calls and informs me that my chest x-ray looked a little funny and that the radiologist was concerned that he might have seen a blood clot in my lung.  I know what a pulmonary embolism is — and it ain’t good.  She then tells me to leave the house immediately and go to the imaging center for a CT scan of my lungs.  Well, 2 1/2 hours later, my veins won’t stop collapsing and they can’t get a scan.  So I go home to wait on some other test that can also inform the doctor of a blood clot.  He called me all weekend (a most wonderful doctor).  When my chest began to get worse a couple of days later, they sent me to the hospital for a second attempt at a CT scan.  It revealed no blood clot, but a hidden case of pneumonia.  By this point, my other tests had come back.  Everything but a test possibly indicating lupus came back with good results.  My six days of abject terror were over.  I still have to see a rheumatology team and return to the gastrointerologist for possible kidney and liver ultrasounds, but cancer is not their worry at this time.

It was the most terrifying experience of my life.  A few years ago, worrying about being so ill would have terrified me for other reasons.  I would have worried about the countries on my bucket list I haven’t visited, that I might never publish my novel (that has yet to be written), that my soul might not be right with my Maker, etc.  But the only thing I obsessed over during those days was my children.  Being 4 and 2, the odds of them remembering much about me had I died were slim.  I worried about my daughter not having a mother’s influence.  And I was terrified that I wouldn’t be here to advocate for my autistic son.  It killed me to think I might have to leave him behind, never knowing how much progress he might make.  I could hardly look at them without tearing up.  For the first time in my life, I understood what real fear was all about.

I’ve learned some important lessons over the past few weeks.  They are:

1.  Life is way more fragile than we think it is when everything is going well.

2.  It’s so easy to get caught up in worrying and complaining about what you don’t have.  It takes only thinking about what awful things you could have on your hands to give you some perspective.

3.  Stress really does kill.  When you allow yourself to get run down and overwhelmed and suffer chronic sleep loss, your body will take note and force you to pay attention.

4.  It is important to learn how to say “no”.  If you keep saying yes to everything people ask of you, it will catch up to you.

5.  Things are rarely as bad as you think they are in the witching hours of worry in the middle of the night.  Calm down and breathe.

I realize that I didn’t dodge any literal bullets, but I sure feel like I did.  It was scary enough to me at the time that I plan to make some positive changes in my life and health.  And one of them is the realization that the only thing that is really worth worrying about is my children.  Yearbooks, book fairs, projects, web sites, and autism cannot be given the power to make me sick.  If I give them that power, I risk depriving my children of me.  So, it’s time to suck it up and think about my world and my worries just a little differently.

So, though I still have pneumonia and feel like I’ve been run over by a bus, I am unbelievably grateful for my blessings.  I wasn’t going to make a New Year’s Resolution, but found I ended up with some after all.  Namely to worry less, take better care of myself, and focus on gratitude.  Feeling thankful today for wake up calls – the kind that turn out to be nothing, but mean everything.   :)

Looking forward to posting reviews in the next couple of days of two books I want to share with you.  What I Wish I’d Known About Raising a Child With Autism by Bobbi Sheahan and Kathy DeOrnellas, PH.D.  and In His Shoes: A Short Journey Through Autism by Joanna L. Keating-Valasco.  Stay tuned.