Fitbloggin’ and My Headspace

I ended up having a blast at the Fitbloggin’ conference.  I truly didn’t know what to expect about spending three days in a city hundreds of miles away with hundreds of people I’d never met.  I blogged about it fairly extensively at my other blog if you’d like the blow by blow.

Since the conference was geared towards fitness bloggers, sessions ran the gamut from “How to use social media to gain followers” to “Using Florida Grapefruit in a healthy diet” to “Self Acceptance” and “When You Have a Lot of Weight To Lose.”  I had originally thought I would gain a lot of information about the nuts and bolts of increasing web traffic and dismissed the thought of the other more touchy, feely sessions.

But after meeting a friend who gently nudged me towards one of the weight loss sessions, I knew that I was right where I needed to be.  The open ended group forums were like a support group, women just telling their stories over and over, peppering their tearfilled commentary with amazing advice about self loathing and acceptance.

It was like a punch in the gut for me who has been struggling over the last six to nine months with my headspace.

And suddenly, I didn’t feel so alone in my thoughts that go towards Crazytown from time to time.  For all of my struggles in my past, some of these women had experienced much worse.  Others had similar stories of difficult childhoods and losing parents early.  Some were subjected to drug abuse in their homes.  One woman, like me, had a child very young.  They were all struggling somewhere on the journey towards self acceptance.

Some inspiring women were already there.  They had managed to rise above their lousy circumstances and their anxiety filled negative self talk and found a way to honor themselves by taking care of their heads, hearts and bodies.  Others were at the starting point, wanting to head towards that place but absolutely clueless where to start.  Many, like me, were somewhere on the journey.  Some days we feel like we have our heads together, we know how smart and capable we are, and we go forward with our heads held high.  Other days we feel like the negative self talk must all be true and we let it win out with a vengeance.

It was honestly an eye opener to hear my own thoughts echoed by so many women.  I think in our daily lives no one is this honest.  For me, I am surrounded by women who don’t really seem to struggle all that much with self worth.  Maybe I’ve put them there for a reason, to help pull me out of that tendency in myself.  But sometimes that makes me feel like I am a total headcase; that I must truly be messed up if I constantly compare myself to others or think negatively about myself.  But at FitBloggin’ , I wasn’t nuts.  I wasn’t alone.  I was just another among many who are working hard to overcome whatever it is that holds us back from being the best version of ourselves.

It was really, really wonderful.

And now I’m connected with some of these women online.  Through their blogs, their tweets and their Facebook messages, it’s almost like an online support group.  And for now, it feels like enough.  It feels like therapy.  It feels like maybe I’m going to be OK.

Trying to Change the Voice In My Head

I’m still here.

The reason I haven’t posted in the last two weeks is pretty simple….I am trying, truly, truly trying, to not be such a downer all of the time.  I find myself formulating these posts in my head about this or that, and I am shocked to realize how truly negative my self talk can be sometimes.  What the hell is wrong with me, I wonder on sometimes an hourly basis.  I’m not sick, I’m not going through some major life tragedy, my finances are stable and I have three amazing kids.  Focus, focus, focus.

That being said, here’s where I am at:

1.  My husband is truly trying.  I see him trying to communicate more (sometimes horribly; last night he insulted my whole family with a comment he made, but at least he was talking; baby steps) and he is trying to be more present.  It’s not perfect, but the effort is there.  So that’s something.

2.  I still don’t have a therapist.  I think this is where I’ve floundered so much in the last ten years.  I used to have a therapist, but when we moved from my hometown, I lost that contact.  I have to wade through the myriad of insurance and paperwork and get there.  Unfortunately the school year is nearly done and now I can hear my inner voice wondering when I would find an hour here and there to see a therapist during the summer.  I am procrastinating, and I know this is important.  I need to find someone to talk to, but it hasn’t happened yet.

3.  I ran our local 5K and was featured in the paper.   I live in, quite obviously, a super small town, which is the only way this “chunky runner” would get featured for a 38:24 5K time.  Still, it was kind of nice to have that pat on the back; I still am running and I still am trying.

4.  I went back to Michigan for my nephew’s high school graduation.  It was another surreal trip.  There’s something about being back there and being confronted with my very different past while I’m living my current life that always makes me contemplative.  I had lunch with my friend (ex? former teacher?  adulterous friend with benefits?) Dennis while I was there, and it left me feeling oddly empty where our previous get together had filled me with wonder and happiness.  Maybe it is just where I currently am in my head, or maybe it’s an acknowledgement of the reality of who we really were to each other.  I am still reeling a bit from it.

5.  My eldest is doing very well at work and in life in general.  Every time I want to feel badly about the choices I’ve made over the last twenty years, I need to seriously remind myself to look at him and where he is.   Most of those choices were either because of him or made with him in mind, and I simply have to allow myself some credit for how well he has turned out.  He’s gotten a big raise at work and continues to live and thrive on his own.   Having him at age 19 might have been the hardest thing I’ve ever done, but it’s clearly also the best thing I’ve ever done.  Must remember that.

Must figure out a way to change the voices inside my head.

 

No More Waiting

I spent this morning looking for therapists.  Well, doing work on a freelance web design job that came up quickly and needs to be done quickly, and looking for therapists.

It kind of feels good to be honest about it, frankly.  I think I spend a lot of time projecting to the world what I want them to see.  People tell me all of the time that they find it hard to believe how insecure I am; they only really find out if they become a close friend.  Most people see me as someone who is organized, intelligent, confident enough to stand up in front of the whole town and speak their mind or boldly walk up to their favorite rock star and ask for a job.

They don’t know what goes on in my head.  I don’t go around talking about it.  A very few people know the stories that I have shared here on this blog.  That I grew up in an exceedingly dysfunctional family.  That I had a brother who spent a great deal of time under psychiatric care.  That I too spent years in therapy trying to figure out to break that cycle.

I never really thought I had, of course.  I knew that when my husband and I got down and dirty in our fights the despair felt black and all encompassing.  It’s true that I have actually attempted suicide several times since I’ve been married.  I know who I am.  I know where my mind goes.  My strength isn’t that I have grown beyond those impulses; I think I have finally accepted that they will always be there.  My strength has to lie in the desire to push back against those impulses when they come, and to try and lessen the amount of times they come.

It’s been a while since I’ve felt this badly.   I remember feeling this way after my third child was born.  I was overwhelmed and frustrated by my husband’s work schedule and my inability to be able to manage the house, the three kids, the burgeoning duties I had working for a rock star.  I went to my doctor then, asking for help.  He suggested exercise rather than drugs.  Not that I wanted to be taking the drugs anyway, since I was nursing and all, but I thought it was a pretty cavalier attitude for an OBGYN who should have known how serious post partum depression can be in a person with depression and anxiety in their background.

The other time I remember feeling this blackness, although not to this level, was a few years back after I ran for elected office and lost.  It feels silly now to type that sentence, actually.  But there was something about this small town I live in, feeling as if the entire world was against me, didn’t want me, didn’t find value in me.  My husband was out of town at the time, and I think that was when I truly started drinking alone at night when he wasn’t home.

And frankly, I have been self medicating with those drinks ever since.  Drinking away the sadness, the pain, the frustration, the paralyzing feeling I have when it comes to what is wrong in my life.  When it all becomes too much, when I am sad or hurt, I pour myself a glass.  There have been nights when I have drunk a whole bottle by myself here at home, which is horrible to admit.  It’s easy enough to do when it seems so culturally accepted; it’s sort of a joke that moms drink their wine at playdates, at night, whenever.  It’s easier to pour a glass than to work on what’s really going on in my head.

But it’s time.  I can’t keep going on like this.  I can’t be this unhappy.  I can’t keep showing my children that it’s OK to live an unhappy life.  In everything else in my life, I see a problem and I lay out the steps to fix it.  And one by one, I complete the steps until a goal is accomplished or a problem is solved.  This has to be the same.

The alternative is simply not an option.

Struggling

It’s not been an easy time in my head the last week.

After I wrote the previous post here, I stayed up most of the night feeling very alone.  Very despondent.  Wanting things to be different, but not knowing at all how to make them so.

As the hours wore on, the darkness kept encroaching in on me.  My dark thoughts went to places they shouldn’t go.

I just want it to stop hurting, I thought.  Maybe things would be easier if I could just disappear.  My husband could find someone who makes him happy.  A better wife, a better mother.  I thought all the things that I know I shouldn’t think:  which way would be easiest?  Least painful?  Least scary?  Least messy to clean up?

I spent years in therapy trying to combat those thoughts.  But I guess when you’re prone to depression, those thoughts really never go away.  You just learn how to make sure that the thoughts do not become action.

What stopped me from sitting in my car in closed garage with the engine running?  The thought of my kids finding me.  The thought of my kids losing their mother at an even younger age than I was when I lost mine.  Thinking of how profoundly awful it would be to inflict that kind of pain on them, and my husband, and my family.

It has been a dark week for me, full of fighting and tears and strange thoughts.  I thought I was past all of this, frankly.  I thought that I grew past all of those selfish, tunnel vision thoughts and was able to use the skills I’ve learned along the way to pull my head and chin up out of the water.  But mostly I’ve realized that I am the kind of person who’s had goes there.  And if I want to get through this rough patch without taking my whole family down with me, I’m going to have to get some help.  And not the kind that I have been using lately, the kind that comes in a bottle and burns your throat going down.

No, I think it’s time for me to find a therapist (again).  I think I need some help figuring all of this out.  Where I am.  Where I’m headed.  Why I can’t be grateful and gracious and happy with all of the blessings in my life.  How to know when I’m fully right and how to accept when I’m not.  And if nothing else, to know that it is OK to not completely know any of that.

I’m struggling, but I’ve still got some fight left me.

A New Reality

It should have been more momentous.

Sitting there, in a classroom last week, listening to my autistic son’s teacher tell me that he was doing well in all his subjects was the stuff of my dreams a few years ago.  A reality I couldn’t imagine, but one I hoped to attain in the far away world called Someday.  A scenario I’d all but dashed after his preschool speech therapist told me my son would “never be normal” and would “never catch up” after I’d seen their IQ testing.  He’d tested a 70, just a cut above mentally retarded.

But somehow, this is now my reality.  My son is in fourth grade, and after years of struggling to help him assimilate into the main stream, he is there.  I sat across from his teacher this year only to hear glowing after glowing report.  My son wasn’t just doing well “under the circumstances” as is usually the case.  He was simply, “doing well.”  He is on grade level in all of his subjects.  He has friends and in fact shows concern for others who are not doing well socially or academically.  He is funny and well liked.

It took a long time for us to adjust our expectations for our youngest son.  To put ourselves in the mindset of not just being parents, but being “special needs parents”, a small but mighty breed of fighters whose sole focus is advocating for and pushing their child as far as they can reasonably be expected to progress.  To accept that he might not ever live an independent life, or go to college, or hold a job, or even drive a car.  But we did it.  We were there.  It was our reality.

It isn’t anymore.

It almost feels too soon, too scary to think about readjusting our expectations and goals again.  To dare to dream that someday our son might just live, but thrive.  That we could experience days of pride and joy for him as we have with our oldest child.

For now, I will be happy with where we are.  It’s going to be a while, I think, before I know that this is new reality is going to stick.

It’s Official

It was September, and I was sitting in a small chair in a doctor’s office not far from Yale University Medical Center.

It had taken exactly one week of school before I begged the teachers and therapists for advice, help, something that I could be doing for my son that I wasn’t already doing.  He was starting to talk now, one word at a time, with a total vocabulary of maybe 50 words.  But he still wasn’t toilet trained at almost four years old, and showing no signs of being ready for it.  His meltdowns were increasing in frequency, and R and Z had struggled when I had spent three days in New York on the Rick Springfield promo tour.   Without me there to anticipate his needs before Michael hit the red zone, the days had been a struggle from this trigger to that one.  Keeping peace in Michael’s world was all about anticipating the triggers.  But how could we remove them from his world?

The therapists suggested we see a neurologist to finally get a concrete diagnosis on paper for Michael.  While his needs were clear and well documented, before the age of three no one would actually give him a specific diagnosis.  If we were to indeed get the diagnosis they anticipated, they could offer him more services and then insurance might cover out of school services as well.

I sat silent in my chair, watching the doctor go through the tests again with my son, the same tests I’d seen done on him a year ago.   The questions were slightly more advanced, but all in the same vein.  I watched with a quiet sadness as one time after another, Michael either didn’t respond to the doctor at all or responded inappropriately.  It wasn’t going to be good, I thought to myself.  I could feel the heaviness in my chest.

“Boy, they always are this cute,” started the doctor.  I must have looked puzzled, because he continued.  “Kids on the spectrum.  They are often the most angelic looking kids.  That’s part of why it’s so hard for them.  They look like everyone else so no one really understands how much they are struggling inside.”

I nodded slowly.  “So he’s on the spectrum then?”  A  year ago I didn’t know what that statement meant.  What a difference a year made.

“Oh, definitely,” he answered quickly, maybe too quickly.  He turned around his clipboard where he had been marking Michael’s responses.  Michael grunted at me, which was his way of asking for the Cheerios he knew were always in my bag.  I absentmindedly reached in and handed him the round, yellow container and handed it to him.  “Look, here’s the range of scores on the spectrum.  0 to 29 is normal. 30 to 50 is on the spectrum.  Down here, in the lower 30s, are where you’ll see Asperger’s or PDD-NOS.  Go into the 40s and you’re looking at full blown autism or low functioning autism.”

I gulped.  “And where does Michael land?”

“He has PDD-NOS, pervasive developmental disorder, not otherwise specified.  It means he has some of the classic symptoms of autism, such as the speech delay, the lack of eye contact, the oral sensitivity.   That’s here in the low 30s.  It’s good; he may end up being higher functioning with a score like that.”

My heart sank.  The therapists at school had mentioned Asperger’s.  Dr. Google had told me that outcomes for children diagnosed with Asperger’s were much higher than for kids diagnosed with PDD-NOS.  But I also knew that he wasn’t talking yet, and Asperger’s kids often talked incessantly, amazingly showing knowledge they should be too young to have, like knowing all 50 states before age 3, and being able to list them in alphabetical order.  That wasn’t my kid.

“So what does this mean for him?” I asked, looking down at his tousled, long blond hair.  Haircuts were a nightmare; he kicked the last stylist three times.

“It means you need to work harder to get his neurons to connect with each other.  The more you can do early, the better chances he will have.  You already have him in the school, which is a good place to start.  You might consider adding some therapies outside of school too, as much as you can afford.”  I made a mental note to ask the school for recommendations on what therapies would be the best to add to his already rigorous in school program.

“Will he ever be normal?” I asked.  “I mean, will he ever catch up to regular kids?”

The doctor looked at me with sympathy.  “His brain is disordered, not delayed.  It works differently than yours, or mine.  That will never change.  But yes, you can figure out how to work with his brain to help him learn.  He can learn.  And I’m sure he will.  As to his prognosis, we’ll need to see him back in a year and see how far he has progressed; that will give us a gauge as to his potential.”

His potential.  Meaning, would he ever be able to be an independent, typical adult.

I could literally feel my hopes and dreams, not only for my son but for my self as well, slip away.

Special Education

“Do you have the paperwork?” asked the school psychologist, one of five people assembled around the table.

Before we’d moved, the Help Me Grow people in Ohio had told me that there was a federal law governing special needs children.  It didn’t matter where we lived, if a child was identified by the “Birth to Three” organization in that state (in Ohio it was called Help Me Grow) as needing services, the public school system was responsible for those services after age three.  If we had stayed in Ohio, a transition team would have been assembled to help us through the process of something called Placement and Planning.  During the Placement and Planning meetings, the school and the parents developed a document called an Individualized Education Program.  This was actually a legal document that guided how the special needs child would be educated.

And while Michael had been identified both by the Help Me Grow group and two different screenings done at a private therapy company and Cincinnati Childrens’ as “significantly delayed”, none of our documents were legally enough for my son to be qualified in the state of Connecticut.   Even so, I had called the school system on our second day in Connecticut, and set up a meeting anyway, telling them that he was a month away from his third birthday.  They agreed to set up a meeting and so here we were, not even three weeks into living here, around a table at the special needs preschool, discussing whether or not Michael should receive special education.

“I do,” I said, pulling out a stack of papers.  All of the Help Me Grow testing, the reports from his private speech therapist, and the two other evaluations.  “Here they are.”  I didn’t want to add that they all showed a significant delay in his speech (he still had no consistent language even though he was now 35 months old).  It was hard to even think about how serious our situation might be with him; maybe he was just late after all.

The speech therapist flipped through the Cincinnati Children’s report.  “Well it seems as if his needs are well documented,” she said, all business, with little sympathy.

The psychologist nodded, looking at the Help Me Grow report.  I knew she was noting the nine month level of speech.  “This one is about eight months old.  Would you say that his level has changed significantly since this testing was done?”

I sighed.  “No, I wouldn’t say so,” I responded quietly.  I felt like we were in backwards world here:  the worse my son was doing, the better chance he had of getting the services he needed.  I wanted to be proud of my son, tell them how unique and special he was, a smiling sweet boy.  When he wasn’t screaming at me.  When all was well in his world.  Which was less and less often these days since the move.

The occupational therapist spoke up.  “I think we have all we need here.  Your son definitely qualifies for our services.  Why don’t we start him 2 half days a week starting the week of his birthday.”

Two half days a week.  It would be so significantly more than the half hour of speech therapy and the sporadic occupational therapy he’d been receiving in Ohio.  I should be grateful, I should be elated that these strangers were going to help my son. But I could feel my throat close and thicken instead, my face growing red with sadness and fear.  “Thank you,” I responded.

It was official.  My son was considered “special needs” and was going to receive “special education”.  I gathered up all of the paperwork that proved it, said my goodbyes, and silently walked out of the room.

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