Tag Archives: depression

I Let Him In: When Depression Comes Knocking at a Special Needs Parent’s Door

doorknock

This was not an easy post to write.  It was even harder to hit the publish button.  But when I decided to put myself out there, I did it with the intention of letting others know they are not alone in their journeys.  This is one snapshot of mine.  

I’ve said before that depression is much like an old lover.  One you’ve successfully managed to get out the door – along with all of his things – and begin a new life.  A life in which laundry gets done, friends get visited, lists get checked off, balanced meals get cooked, and the things you enjoy get enjoyed.  But something or a lot of things happen.  Usually in succession and often involving sleep loss, grief, financial or marital stress, etc. — and, under the weight of exhaustion, your resolve weakens.  That’s when he comes looking for you.  Whispering in your ear.  Telling you all your efforts are futile.  Crooning the familiar songs he sang to you before.  Knock, knock, knocking at your door.  Until you open it and invite him to come inside — and his seduction is complete.  And the next morning –every morning you wake beside him– you know you knew better.  But now his clothes are in the closet, his toothbrush beside yours, and he is ingrained into your life once more.

If you read me, you may have noticed you haven’t been reading me much lately.  I’ve noticed too.  I’ve noticed lots of things.  When I do, I race off to WordPress and create a post, give it a title, and even jot down some of the words that are clamoring to be released. But is isn’t long before he begins whispering to me. This post will take a lot of time.  Of course, if you write it, you’ll likely infuriate someone and will feel the need to respond.  Which will just upset you more than you already are.  You’re tired.  Tomorrow –you’ll write it tomorrow.  Of course, I don’t.  It doesn’t get written.  Thoughts and emotions keep pounding, and everything just gets louder. From the dishes being unloaded to the dog’s incessant barking to my children — Bronwyn just being five and Callum being a verbal stimmer. It’s all so very loud.  And all I want is to sit on a porch overlooking the mountains on a cool early morning and hear…nothing.  Nothing but the wind blowing and perhaps a little rain or moving water.  No voices.  No screaming.  No phone ringing.  No cacophony of everything I need to take of.  To sleep.  To read.  To write.  To recharge.  Because I am simply depleted.  I attempt to get my head together and manage to accomplish a thing or two.  But my constant companion draws me back in to myself.  His incessant whispering for me to lighten my load and sit down for a spell.  To put it off for another day.  To pull the covers over my head and attempt to hold the world back.  Yes, he knows how to talk to me.

My heart aches.  My fears bully me.  And even my bones feel tired.

I’m starting to see the things I feared and knew were coming.  I see my sweet little boy, excited by the mere presence of other children — but oblivious to their activities and play.  He jumps, laughs, and flaps away — and has no understanding that he isn’t a part of it all.  Part of me is grateful he doesn’t yet understand– while the other part of me just hurts.  Everywhere we go, we take two cars.  There are few things that we can confidently plan as a family.  It’s too crowded, too bright, too large, too hot, too long.  Too everything. People not seeing the delightful child he really is hurts. His sister having an uneven share of our time and attention hurts.  The looks we get hurt.  His discomfort hurts the most.

Sometimes the view from this ride is beautiful.  Sometimes, it’s fun.  But right now it is making me sick.  And I just want so very badly to be let off.  I want the support of my father, my stepmother, and my grandmother.  I want them to tell me it will be okay.  But they’re dead.  And, every time I get on the highway or have a strange pain, I fear dying myself.  Not for me, but because who will take care of him?  Who will fight for him?  And how – how – do I ensure that his sweet sister will understand that I love her equally though I cannot give of myself to her equally?  Some days – or weeks – it’s too much.

And, in my darkest moments, I fear that I am not enough. That I’m doing this all wrong.  Making the wrong decisions.  Not doing enough.  Doing too much.

Yes, I have been to see my doctor.  I have taken antidepressants.  They helped marginally, but my hair started falling out (a truly unfortunate side effect for a depressed person if ever there was one.)  So the doctor and I are trying again with another antidepressant.  Trying because there is no other choice.  For the alternatives to managing this are unacceptable.  My babies need all of me, therefore depression can be allowed none of me.  There simply isn’t enough room for him in my house.  I’ve told him he must leave.  To pack his stuff and get out.  Good riddance and all that.  So far, he hasn’t budged and has turned into a squatter instead.

But I know something he doesn’t.  I know the unconditional love and trust of two children who depend on me.  I know the maternal bliss of snuggling against their sleeping forms in the wee hours of the night.  And I know that, in this battle between him and me, who I’m really fighting for.  In nature, whoever gets between a mother and her young is always at a disadvantage.  He’d do well to remember that.

“Now the standard cure for one who is sunk is to consider those in actual destitution or physical suffering—this is an all-weather beatitude for gloom in general and fairly salutary day-time advice for everyone. But at three o’clock in the morning, a forgotten package has the same tragic importance as a death sentence, and the cure doesn’t work—and in a real dark night of the soul it is always three o’clock in the morning, day after day.” 

― F. Scott Fitzgerald, The Crack-Up 

If you liked this post, you might also like:

Somebody’s Knockin’

Why I Won’t Be Getting Mother of the Year: Layers of Understanding

DIY Special Needs Enrichment, Therapy, and Play on Pinterest

DIY Special Needs Enrichment, Therapy, and Play on Pinterest


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.  🙂

Somebody’s Knockin’

Yesterday, four people stopped to ask if I was okay.  Four.  I wasn’t sick.  I wasn’t crying.  And I had even done up my hair and worn makeup — something I get increasingly bad about doing as the school year begins to wind down.   And though the question was nothing but kind concern, the expression on their faces was unsettling.  Cocking their head and silently taking me in, as if they were seeing something not immediately obvious.

I think I said I was just tired.

But one of them looked a little more and asked again.  And I could tell she was really seeing what I was trying hard to not reveal.  She herself has lived years of worry and grief for her own child – for different reasons, but the effect is much the same.  She didn’t put what she saw into words, but I knew what words they would be.

There is an expression that can be seen sometimes in the eyes of parents of special needs children, parents whose children are drug addicted, and parents whose children have died.  In short, any parent whose dreams for their children have been significantly altered or ended.  I think you can’t fully see it – every nuance – until you are able to recognize it in yourself.   It’s not even there most of the time.  But, some days you look and it’s there again.  And it isn’t a look of anguish – as some might expect.  No, it’s a look of…nothing.

Today I feel like a walking place holder.  My body goes to work, but not my enthusiasm.  I eat the food.  But I’m not really hungry.  I laugh at people’s jokes, but I’m not sure that they are funny.  I smile at my children’s antics, but I am somewhere else.  And, because I don’t know where that is, I can’t seem to call myself back.

It’s funny how differently people handle a crisis.  There are some who fall apart during the crisis.  They rage and hurt and grieve — and then accept it and move on.  I’m of the opinion those folks fare best.  There are those who disappear.  They can’t handle it and never do — never realizing that stopping and taking a good look at what’s following them is the cure for what haunts them.  And then there are the autopilots.  They announce the crisis, put together a crisis team, make a plan, and oversee its implementation.  These folks appear to be doing wonderfully — and lots of folks congratulate them for their strength.  I’m one of those.

The problem, of course, is when the immediate crisis is over.  The support team is no longer on red alert.  Others think they are fine.  And those seemingly limitless  reserves of adrenaline are now empty.

That’s how I feel right now.  Empty.  Numb.

It seemed like I was working toward some very specific things this school year — Callum starting daycare, increasing therapy, his turning three and getting a diagnosis, his entering public school, the IEP, etc.  And, suddenly, all of those things have passed.  I gotta tell you –it feels a little anticlimactic.

Perhaps it is simply the realization that there is no finish line.  It’s the long haul.  And my tank – at least today – is empty.  Heck, it’s so empty I don’t even have the energy to try to fill it back up.  I’m just plain tuckered out mentally.  Content to sit in my stranded state and look at all the people passing by.

But the thing about motherhood is that I don’t have the option of doing that for long.  Melancholy is so much easier to wallow in before you have two little souls depending on you.  And I’m realizing that there is only so much longer I can go before middle of the night insomnia is going to take me down.

So I’m giving myself two weeks.  If I haven’t shaken this off in two weeks, I’m going to see the doctor.  I think I’m also going to try to get away for a day or two by myself.  To sit in a hammock, read a book, and stop this incessant …thinking.

For I have allowed all my worries — the what-ifs, the what-will-bes, the attempts to explain, and the guilt of not being able to be everything that my son needs– to stir up a cacophony in my mind , in endless repeating cycles, that are now attacking because everything I was previously so focused upon has come to be.  And yet little has changed.

If I were a computer, I’d give myself a hard reboot.

I’ll be okay.  Because I have to be okay.  Because these sweet little babies I love require me to be so.  The trick, I guess, is to figure out how long you can sit back and decompress before you begin to atrophy.   Before melancholy is no longer just an unwelcome visitor continuing to knock on your door — but one whom you invite to come inside and sit down a spell…before never leaving.

And to remember that all of these feelings, thoughts, and worries are not to be given permission to steal my joy.  I am very aware that I am blessed and very grateful for this sweet little boy whose future I keep obsessing over.  He is not the cause of this melancholy.  That’s me.  My head.  My giving in to fear.

And there is nothing to do but work it out.  To stand up and begin going through the motions — until, like walking, mental muscle memory takes over and every little thing  isn’t a major effort.

This journey?  No, it’s definitely not for sissies.   But that’s okay.  I’m tougher than I look, and I’m stronger than I feel.

And I’m not opening that door.

“When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” 

-Kahil Gibran

The Place Where There Is Time for Everything

Daylight Savings Time, known to our European friends as summer time, was invented for the purpose of extending daylight hours past the end of a normal working day.  This, in theory, is supposed to allow one to get a lot more done whilst one can actually see what one is doing.  I am one of those folks who actually likes Daylight Savings Time – not because I get any more accomplished, but because I find the immediate darkness of winter a tad depressing.

With the recent change to Daylight Savings Time, it occurred to me that, perhaps instead of merely joking about it, we should actually explore increasing the number of hours in one day.  Because there simply isn’t enough time.

A wise nurse practitioner once gave me her opinion of why so very many people are taking antidepressants these days.  She doesn’t think that people are getting psychologically weaker and just taking the easy way out.  She believes it is because the human brain was not intended to take on the level of stress – due to multitasking – that we load on it in our very busy society.

People once lived simply.  They got up – after a full night’s sleep.  Presumably, more folks had a good night’s rest due to the lack of TVs, video games, and other electronic distractions.  Some of you who have ever forgotten to pay the electric bill may have discovered this for yourself.  They ate breakfast – because the kind of work they would be doing required it.  Then they went about their day and worked – the physical kind.  Because physical work reduces stress, they worked out many of their frustrations.  Then they went home.  Where, because they didn’t have telephones, cell phones, computers, passive entertainment, etc., they passed their time actually talking to their families.  Connecting to their loved ones.  Discussing their difficulties.  Perhaps reading a book or writing a letter.  Before too long, it was dark, and they went to bed – repeating the cycle over again.

They were not jumping in the car, racing to take Child A to dance class and Child B to soccer practice.  They weren’t on hold trying to get their cell and TV service switched.  They weren’t filling out paperwork or online forms for the million things we must do each day.  They worked hard, yes.  Very hard.  But they didn’t multi-task to the extent we do today.  So, despite all that needed to be done in their lives, their tasks didn’t increase in complexity from one moment to the next.

Contrast that with today’s world.  In the course of my day, I arrive to work, observe the bells, teach, discipline, talk to parents, answer the incessantly ringing phone, order books, process books, utilize 4 to 5 completely different databases/software programs, email multiple persons, copy, scan, direct aides, assist teachers, proofread, talk to students, recommend books, and so much more.  I have no doubt that most of you experience days similar to mine.  All while keeping in the back of your mind who you have to call tonight, what meeting you must attend, which doctor’s appointment to go to, which items you must buy at the grocery store, your child’s band concert, the birthday gift you must order online, the reservations you must make, get an oil change, pick up prescriptions, etc.

It’s not what our minds and bodies were designed to do.  Please do not misunderstand me.  I am by no means a nature girl and would not be the least bit thrilled if you invited me to ditch it all and live on a farming commune.  I like the modern world very much thank you.  But it doesn’t mean this was what nature intended for me.  So, in that nurse practitioner’s view, antidepressants are helping people’s brains to adjust to unnatural circumstances.  And, while I personally am not taking antidepressants, I happen to think she is correct about the unnatural mental burdens of the modern world and the need for modern medicine to alleviate it sometimes.

I thought she was correct years ago when she first said it.  But now it is beginning to take on new truth.  Callum has been having six private therapy sessions and one Early Steps infant child development specialist session a week.  He has to return for a look at his ear tubes.  We need to meet with the doctor to discuss trying him on melatonin.  Which brings to mind the insurance fiascos I have been having and the three separate phone calls I am supposed to make to 1-800 numbers constantly busy.  I am supposed to meet with a CARD representative soon and follow up through the university regarding behavioral therapy.  Last week he was diagnosed by an out of town specialist and yesterday was his IEP.  We are supposed to model language at all times, keep non-engaged stimming to a minimum, train him to tolerate joint attention type activities for increasing periods of time, attempt to engage him with the books he is completely uninterested with, use PECS, engage him with the iPad, and on and on and on.  All this while doing all the parenting things we would already normally be doing for both him and his typically developing – though exhaustively precocious – 4 year old sister.  While I’m working full-time and my husband is working on his degree.

I am not complaining about parenthood.  I am so very blessed to have my beloved little stinkers and know it.  But I am complaining about the lack of hours in the day to get done everything that must get done and still have time to sleep, catch up with loved ones, feel like a human being.  I am complaining about the ever-increasing speed and complexity of our lives.  Because the world wants way too much.  It wants too much if you aren’t parenting a special needs child or being a caregiver in some other capacity.  But, if you are, all of those must-dos for a loved one who cannot do them for themselves build up into a cacophony of mental strain that can cause insomnia, depression, lack of immunity, and exhaustion.

In researching a university behavioral therapy study for my son, I found another study being done by the same department suggesting that depressed mothers complete less child interaction homework than non-depressed mothers.  It occurred to me that, perhaps, the depression isn’t causing less therapeutic homework.  Maybe those mothers are depressed because there aren’t enough hours in the day to do said homework.  I know that I wouldn’t likely be posting to you if insomnia weren’t aiding my writing time.  There simply aren’t enough hours in the day.  I have felt enormous guilt over the things that I don’t have the time or energy to accomplish.  The extras I can no longer take on at work.  The repeated requests to have to take time off to go to this meeting, that doctor, or whatever keeps coming.

And the hard reality is that the world is too busy creating new demands upon itself to worry about how we are keeping all the juggling balls in the air.

No, I don’t want more daylight with my hours.  I want more hours with my daylight.

Years ago, I read a poem by the Israeli poet Yehuda Amichai titled “A Man in His Life”.  It is about all the things we must do that we do not have time for in our limited existence on Earth.  I’ve read a few different translations* of it, but this one is the most beautiful to me:

“A Man in His Life”

A man in his life has no time to have

Time for everything.

He has no room to have room

For every desire. Ecclesiastes was wrong to claim that.

 

A man has to hate and love all at once,

With the same eyes to cry and to laugh

With the same hands to throw stones

And to gather them,

Make love in war and war in love.

 

And hate and forgive and remember and forget

And order and confuse and eat and digest

What long history does

In so many years.

 

A man in his life has no time.

When he loses he seeks

When he finds he forgets

When he forgets he loves

When he loves he begins forgetting.

 

And his soul is knowing

And very professional,

Only his body remains amateur

Always. It tries and fumbles.

He doesn’t learn and gets confused,

Drunk and blind in his pleasures and pains.

 

In autumn, he will die like a fig,

Shriveled, sweet, full of himself.

The leaves dry out on the ground,

And the naked branches point

To the place where there is time for everything.

* Translated from the Hebrew by Benjamin Harshav and Barbara Harshav