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Summertime Schedule

Ah, summer! A time for fun! A time for relaxing! A time for chaos!

When you are autistic, the unorganized, seemingly endless days of summer can appear as a nightmare!  Sure, the first few days of sleeping in are great.  Then the trips to the beach, the park, the theme parks all seem nice on the outside, but something deep inside starts to go a little haywire.  By the two-week mark, circuits are as fried as all the yummy summer food you’ve been eating!

Or at least that’s how life appears to be for my son.

Connor fights school.  He whines about the appointments.  He complains about having to do all the non-recreational stuff he has to do for his ASD diagnosis.  “No school today!” is a common refrain at our house in the mornings.  He usually follows it up with “maybe tomorrow”, as if he’ll be more prepared by then to buckle down.

What he may not consciously realize is that every time we have a prolonged break from school (and thus a break from routine), his world starts to spin out of control.

There are too many options, too many fun things to choose from that he eventually suffers from choice paralysis.  When his days are structured and ordered, we have a clear, limited number of choices because our “free choice” time is limited.

To a child this may sound like torture! Only having an hour or two of free time each day! During the summer!!! This woman is a fascist!  But for the child with autism, the structured day is the mental equivalent of eating your vegetables.  You may not always like them, and I can dress them up to taste better, but they will in the long run make you healthier and stronger.

Since school let out two weeks ago, I’ve watched my son’s behavior slowly devolve from happy, compliant and self-contained to needy, angry, and defiant!  Tantrums went from 1 or 2 every other day to 2 to 3 every day.  Time outs tripled.  Bad behavior, we had happily curtailed, reemerged.  Anger was always near the surface.  Hitting, kicking, throwing things, all behaviors we had worked on diligently for the past year and had successfully disappeared from his repertoire began to take shape again.  Perhaps worst of all, his language began to disappear.  Words were replaced by screams and grunts.

The de-evolution culminated on Saturday when we were driving home from my sister’s house.  Connor was in the back pretending to be The Amazing Mumford.  When I chimed in with his magic words “A la peanut butter sandwiches” something in Connor snapped.  He took his seatbelt off and lunged at me.  Thankfully we were close to home but for those few minutes in the car there was a violent struggle as I tried to fend of the little demon that had replaced my child and drive at the same time.

That night I cried, Connor cried.  I drank wine while Connor drank juice and was put to bed by my husband.

The next day my precious child had no recollection of the event, but I still felt scarred by it.  I avoided him all day, leaving the parenting to my husband.  I busied myself with groceries, cooking, gardening.  That night we left Connor with my parents so I could have time out of the house and away from my child.

By the time I returned I felt better, more centered and ready to face the daily struggles of parenting an autistic child.  When I picked up my son, he was so happy to see me, so happy to hug me and kiss me; I wondered at the seemingly dramatic change in him.

But when summer school began Monday morning, and we began our routine, my happy child reemerged.  Sure, he didn’t want to go to school that morning, but by the time I picked him up, he was happy, compliant, and eager to get on with his schedule.

While all children benefit from consistency, children with autism seem to need it to function.  And though Connor enjoyed his first few days of freedom, I have a feeling, he’s secretly happy to be back in school

If you’re interested, here is some more information on why consistent schedules are important for both typical developing children and for ASD children:

Autistic Children Need a Consistent Schedule

Norrin’s Story of Schedules

The Importance of Schedules

Ready, Set, Routine!

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Overload

I have been running at level 6 on a scale of 5.  My brain seems to focus and my emotions feel fried.

There are too many balls in the air for even this practiced juggler to catch!

A wedding and a baby shower are in the works.  Each event alone requires seemingly hundreds of decisions.  And inevitably, as in my last post, when there are events, there are little dramas.

Some dramas are bigger than others, potentially life changing.  To deal with the fall out of my invitation decisions, I’ve been thinking a lot about the nature of friendship as an adult, particularly the nature of friendship for a stay-at-home mom to an autistic child.  Being the parent of special needs child means belonging to a very isolating world.  Our children keep us busy running from one therapy to the next, juggling meetings and reports and paperwork until there doesn’t seem much room for anything else.  For me and Connor, I keep trying to add to our already busy schedule.  I want to keep moving Connor forward towards our ultimate goal of mainstreaming.  I need to keep pushing him, keep trying new activities, new therapies, new ideas until we strike upon something that works for him.  And although this is best for Connor, it doesn’t really allow me to develop friendships with the other parents.

Most other parents of special needs children are dealing with the same issues, and the same potential social explosions from their own children.  Play dates have to be carefully coordinated and can be easily cancelled if a child’s behaviors are out of control that day.  Sure I have time to myself during the day, but who else does?  My Pilates classes are filled with retirees!

So time to seek out activities that will make me joyful!  I’ve signed up to volunteer with a few programs, as well as subscribe to a book club.  But not immediately since I’m in the midst of planning a shower and a wedding as well as parenting my autistic child!  And round and round we go until I feel just about to explode!

To top it all off my great-uncle passed away.  Nearly 90 and suffering excruciating pain due to cancer, he is much better off in the arms of our Lord than he was dwelling here on earth.  And though it’s hard to develop a close relationship with a man who devoted his life to serving the Lord, as well as his brothers and sisters, he was still a man I loved and respected.  He baptized me, he blessed me, he carried God’s love to me throughout my entire life.  And I miss him.  I will miss him.  I will miss him.  I will miss him until I join with him again one day in God’s presence.

So today while my flu infected son naps, I take a little time to just let myself feel everything and I don’t try to stop the tears.

Back in the Swing

I’m finally feeling like my normal self again and getting into back into the swing of things.

It’s difficult to know what the problem is, work towards making things better and still have to wait for improvement.  I hate increments! I just want everything now!

Just kidding…sort of…

My ex often accused me of being a contradiction.  And I admit it, I absolutely am.

With my sweet baby boy, Connor, who is often not very sweet, I have patience for days!  Hand me a crying baby and I can pace with that child for hours.  Give me a craft project to do and I’ll wait for glue to dry, paint to settle, pieces to arrive like there is never a deadline. Send me your most obnoxious, slowest reference customer and I’ll happily sit there listening to them prattle on about how they think Florida was one of the original 13 colonies.

But something that has to do with me and what I want, I want it, like, yesterday!

The house, the yard, weight loss, mental health, getting pregnant, I want to be working on all of it now.  Actually, I’d like to have accomplished all of those things so I can sit back and relax.

Instead I have to wait.  There’s a time and a place for everything, unfortunately.

I feel like Veruca Salt…a little.

I’ll try to be more patient for Christmas and remind myself that all good things come to those who wait.  Damn it.

Winter Grays, Blacks and Blues

I am many things.  I fill many roles. I exemplify many virtues and many failings.  I tend more towards happiness than unhappiness, more towards optimism than pessimism, more towards believing the best in people than believing the worst.  I keep my chin up, my head high and smile through the pain, knowing that tomorrow will be better.

And that usually works.

And the medication usually works.

And I’m ok, I’m good, I’m on solid ground.

And then the world changes a little bit and I’m reminded that my condition isn’t curable, just manageable.

I was diagnosed with Bipolar disorder at 20 after my previous diagnosis of mild depression was thrown out.  After a sexual assault, I went into a months long manic period.  If you’ll read the link I’ve included I engaged in nearly all of the symptoms listed.  I was quite literally out of control.  During that period I felt like I was outside myself.  I could see what I was doing was harmful and I just couldn’t stop it.  One day I had a panic attack and thought I was having a heart attack.  When the ER doctors told me what it was I decided it was time to go back to see my old psychiatrist.  We tried various drug cocktails, including Lithium (which made me feel like I was experiencing the world through a thick layer of cotton) and it took a long time to figure out what was going to work best.

The mania period ended just prior to my senior year of college.  I was walking the tightrope of mental health mostly because I still felt like an open wound.  I supplemented my medication with alcohol, wild behavior and far too many dates.  I packed this life cocktail into my wounds hoping they would heal but they merely scabbed off.

I would feel better for a while, stop my medication, and then fall right back into a depression after a month or so.  I wanted so badly to be cured, to be fixed that I was very close to delusional about what was actually going on with my mental health.

It took years of feeling better then feeling worse to finally commit to staying on my medication.  It’s taken years of therapy to understand that I’m not fatally flawed because of my chemical imbalance but that it is as much a part of my as my eye color and the size of my feet.  I can do nothing to change it.

That was a hard pill to swallow (pun intended).

For years now my mood has been stable, I only rely on a very low dose of an SSRI, a medication that deals with increasing the amount of serotonin in the brain.  I use cognitive behavior techniques in my every day life to combat the symptoms of my condition.  Recovery International is a mental health group that focuses on the teachings of Dr. Abraham Low and his work with cognitive behavior therapy.  My former in-laws introduced me to this work and I will be forever grateful.  There are few days that go by that I don’t use the tools that are taught through this work.  Two favorites of mine are that I “have the will to bear the discomfort” of an unpleasant situation and to remind myself that I am just an average person, so nobody expects perfection from me.  With these things working in my favor life is generally good and the real Erin gets to shine through the condition.

Still there are times that I feel down, or blue, when the world’s colors seem a little grayer, the night a little blacker.  Usually I can shake it off in a day or two, but sometimes it lingers and I’m reminded that my fight is a life-long one.  The coming of winter always reminds me of this most poignantly.  Colder temperatures and longer nights rob me of my precious sunshine, sunshine which helps create the chemicals that keep me balanced and happy.

For a while there I didn’t even recognize that I was feeling worse.  I felt tired, but I’m always tired (I’m a mom!).  I lost interest in my normal activities, but I blamed that on being tired or the busy schedule my son has.  It wasn’t until I realized how disconnected I felt from everyone around me that I knew something was wrong.

Now I know and now I can fix it.  Sure it won’t be permanently fixed but identifying the problem is half the battle.  So long walks with the dogs, more vegetable gardening, eating al fresco will all help get me out into the limited sunshine hours.  Purposefully engaging in social activities, making myself complete to do lists, and writing, writing, writing will help me “fake it til I make it.”

And sooner than I realized I’ll be back to singing silly songs with Connor, baking delicious treats, and generally my nerdy, happy self again.

Paranoia

Connor’s conception was something of a surprise.  Ok, it was a BIG surprise!  I was on birth control but that didn’t stop an egg from slipping into my uterus.  The antibiotics I took that month definitely interfered with the whole system and Connor was conceived.  Ta da!

At first I didn’t know what the hell was going on.  I was nauseous and tired. I had random pains, mysterious cramping, and some truly startling things happening downstairs.  I didn’t know what was going on!  I assigned my symptoms to a myriad of problems.  Bladder infection? Terrible IBS?  World’s worst yeast infection?  I just didn’t know.  I was grasping at straws.

Finally a month had gone by and it was just a day before my period was supposed to start, I thought I’d take a pregnancy test.  You know, just to rule it out.

Imagine my surprise when it was positive!

I frantically researched false positives….which gave me little encouragement since false positives are extremely rare.

I then ran to the store and bought two different types of pregnancy tests.  One with lines.  One with positive and negative.  When those all came back telling me I was pregnant I decided I need to try the digital kind just to confirm.  Those other ones were sort of faint, and maybe all the lines weren’t totally clear.  But the digital would say once and for all pregnant or not pregnant.

You no doubt have figured out what it said.

Since that surprise I have been extremely paranoid.  Every few months something goes on with my body that makes me worry I might be pregnant.  My breasts are sore.  My period is a day late.  I am extremely tired.  Any of theses symptoms (and many more) are enough to send me into a tailspin of worry.  There are absolutely logical explanations for each symptom, which my illogical paranoid brain frantically ignores as it rushes me to the pharmacy to buy a five-pack of pregnancy tests.  And every single time I take a test it is of course negative.  And my paranoia goes back to sleep for another month or two.

I just don’t want to be caught off guard again.  Next time I get pregnant I would like it to be because I was actually trying to get pregnant.  Although these surprise stories are usually funny, I don’t want to repeat it.

What I really want is an off switch.  I just want to turn my ovaries off until I’m ready to use them.  And I’m not ready yet!

Bad Day Made Better

Last night was yet another night of nightmares, anxiety outpourings, and early morning wakeups.  Since returning from vacation Connor has been plagued by bad dreams.  Though he can’t communicate to me what these dreams are about, the fact that he clings to me, crying, whimpering my name clearly communicates that these dreams focus on my leaving him again.  It breaks my heart.

So this morning is not going well.  I’m exhausted.  I have a headache.  I’m downing enough caffeinated beverages to replace my blood stream.

But there is no amount of Tylenol and Diet Coke that can help me be the mommy I need to be.  I just have to muscle through and keep my unraveling patience in check.

To make this bad day better I’m taking a little me time, just a little.  In between doing the dishes, folding laundry, replacing burned out lightbulbs (which is oddly one of my least favorite chores, I don’t know why, but I really hate it), and various other household tasks, I’m taking a few minutes to sort myself out.

Here are my top three treats for today:

 

I ordered this dress on sale about a week ago and it came today.  Yay!  It’s a little dressy for running errands, picking up Connor from preschool, and sitting through therapy, but it makes me happy.

I bought the new Jason Aldean record.  It literally came out today.  It’s a little predictable, a little run-of the mill, but it’s familiar like slipping on an old sweatshirt.  I’ve been listening to it on repeat.  Country music makes me smile.

I booked a ticket to Chicago to see my little baby nephew, Baby N!  And because I had a voucher from American for screwing up my vacation, I could afford to book my return flight in first class.  FIRST CLASS!!  Oh yeah!

Well, my alone time is almost done now, so I’m off to get my baby boy and enter the whirlwind of preschool emotions.  But I already feel better.  And I know we’ll survive today.

Off And Away

Well last week was just awful. I managed to contract one of the worst flu viruses I’ve ever had. I literally couldn’t get out of bed for two days. The rest of the week I managed to pull myself around in order to do some bare bones mothering, but other than that I was in a serious, committed relationship with my bed.
And when I say one of the worst flus ever, I’m not exaggerating. I had fever hallucinations! For a short amount of time I came alive in the book I had been reading. It was horrifying! Thankfully that lasted only a few hours. I joyfully returned to my horrible state of illness to escape those terrible visions. The rest of the time I was simply miserable.
Neither Connor nor I would have survived without my mother and the fiance. Though Connor would have been happy enough to skip school all week, he would have been upset trying to feed himself for those days.
And then it was my birthday.
I was so sick all week that I forgot it was even my birthday a few times. I normally love my birthday and get very excited making plans. This year I barely mustered enough energy to go to dinner.  I appreciated everyone’s kind birthday wishes, as well as the gifts from family and friends. And then I happily slept for 12 hours. Best. gift. ever.
Now it’s the day after my birthday and I’m heading to Grenada in a few hours. So, yeah, I’m exhausted but excited. There is a ton of stuff to attend to that fell to the wayside this past week that will simply have to wait a little bit longer. I’m off to recuperate on a tropical island.
Maybe when I return it’ll actually feel like fall around here. I’ll rescue my super-mom cape from the bottom of the sewing pile and life will get back to normal, or at least as normal as we get.