That Which Doesn't Kill Us Makes Us...Bitter

Despite the upbeat title of my blog, this post is not sunshine and daisies.  As positive as I try to be about Drew, there are some days that leave me feeling helpless and immobile.

As I write this post, Drew is serving the latest in what has been a long line of punishments here at home due to school misbehavior.  He made a poor choice today and received in-school suspension for half of the day tomorrow.  Frankly, with a week left in the school year, I am surprised that they did not just expel him for the remainder of the year but I'm pretty sure they take his diagnosis into consideration when deciding his punishment.  If you were to look at his rap sheet, I'm sure it's as long as my arm.  Repeated office visits, isolated lunches and in-school suspension seems like they have been the norm for Drew this year. 

Also as I write this, the giant wad of bitterness which has been growing inside of me for 3 years might have reached it's maximum size today.  I am so very, very bitter.  And I do not enjoy this state of mind.  It makes me mean and short-tempered towards the undeserving.  It makes me resentful towards people who have typically-developing children.  It makes me jealous of the freedom that other families enjoy with their "normal" children without having to be pinned down by doctor visits or wondering if their kids can "handle" things if they simply want to go out to eat one evening.  It turns me into a recluse, shutting myself off from things unless I absolutely have to do them.  It makes me profoundly sad.  Bitterness sometimes makes me want to literally run away.  I am angry at myself for giving into the bitterness.  It makes it hard to enjoy the good days because I am almost always waiting for the next bad one.

To add to the fun, I have a lot of shame attached to my bitterness about Drew's diagnosis with a psychological issue.   Many people who haven't experienced this, though well-meaning, have said things to me such as, "It could be worse" or "At least you know what the problem is".  Believe me, I know how much worse it could be.  My mother lost a baby shortly after birth before I was born.  My stepbrother died of cystic fibrosis when he was almost 30 but not before repeated illnesses and hospitalizations.  I can't imagine the grief my mother, father and stepmother still endure.

I am grateful that the universe sent this physically healthy yet somewhat limited child to us.  There couldn't be two better caregivers or advocates for Drew.  However, Bobby and I are entitled to grieve over our child's struggles and be angry about the hand we have been dealt.  Period.  I have to keep telling myself that because otherwise I'll start to feel even more bitter.  Yet, I feel SO guilty being SO angry about Drew's issues but everything is relative, isn't it?  Our situation is not life-threatening but it is still quite significant to our family.  I wish there were an easy way to explain this to people but I don't think anybody can "get" it who hasn't been a member of a family affected by a psychological condition.

So...I've tried several things to ease the bitterness.  I've tried to pray it away.  I've read several books about raising autistic children.  I've tried to distract myself with hobbies and fun.  I've tried to stay busy.  I've tried to find the lessons to be learned because, as we always tell people when they experience difficulty, "everything happens for a reason." I've tried to write (duh), meditate, and talk to people, including therapists.  Some of these things have given me perspective and given me a modicum of comfort.  Some of them haven't worked at all (or maybe just not yet) and have often left me feeling worse.  Mainly, I just want to be able to lose the underlying current of panic that seems to always be quietly churning somewhere deep inside me.  That would be enough for me.

My Economic Stimulus Plan

After a difficult morning recently, I was having a text conversation with a friend of mine and venting to her about Drew's most recent struggles at school.  She is very sympathetic as she has a child who has some difficulties too.  We were talking about tough decisions we were contemplating.  I am trying to decide whether or not homeschooling Drew is the best approach for him this next school year (an idea that requires it's very own blog post) and she was talking about leaving her job to maybe ease the stress that comes along with her job requirements.  This is, of course, a monumental decision and not an easy one at all. 

After we were finished texting, I got back to my chores and was thinking about how many people I know who do not work outside of the home simply because they are raising a child who is extra high-maintenance.  I personally know of 3 people, including myself, who do not work in large part so that they can care for their special needs child.  Between school meetings, doctor appointments, therapies, evaluations, and drive time to all of these things, working at a full-time job would be next to impossible for us.  Yes, there are people who do all of these things and work too.  Maybe they are better organized (I'm not) or maybe they have a spouse or a near-by family member with a really flexible work schedule (my spouse's/family's schedule is not) and these blessings help them be a quality caregiver in addition to being full-time employed.  I don't want to turn this into a fight between those who work outside the home and those who stay home.  That's not my point.

My point is that if I (I'm only speaking for myself) could find a place for Drew to go to school, receive the therapy he needs, be in a therapeutic environment, and be educated through a rigorous academic curriculum ALL IN ONE PLACE (saving me valuable driving time), I would go back to work and my tiny teacher paycheck could offer some stimulus to the economy.   (Before anybody calls me on it, I know that in the Houston area there are some schools which do exactly what I described above.  They cost in the neighborhood of $24,000 to $30,000 a year.  Yeah, pick your jaws up.  This is not realistic for us.)

To summarize, throw some money at a publicly-funded school solely for kids on the autism spectrum (there ARE public school systems who have these...more on that another time), offer a fabulous curriculum, add qualified teachers and autism specialists and me and several of my friends will go back to work and we promise to spend our paychecks which will stimulate the economy.  Or am I oversimplifying?