Guilt

I suppose it's inevitable, when you are a parent, to feel guilt over things that happen to your children.  I am no exception to this, whether we're talking about Zach's height (I'm only 5'2" on a good hair day) or Josh's autism.

I do understand when the logical side is in charge for a few minutes (yeah, that side doesn't ever get very much time... ) that I am not at fault for most of the things I feel guilty about, particularly when it comes to Josh.  But knowing that on the logical, objective level is one thing.  Really feeling it on the emotional, completely subjective level because this is my baby we're talking about, is another thing entirely.

Ironically, when comparing my two pregnancies, Josh's was the least complicated.  Honestly, with the exception of one time when my OB could not find his heart beat and had to do an ultrasound to make sure everything was ok (it was), it was probably the most straight forward, no-complaints pregnancy ever.  I didn't even have morning sickness with him - well ok, there was that one time I felt a little queezy after breakfast, but that was it.  Which was in stark contrast to when I was pregnant with Zach and had a very long list of complications and overall badness. 

While the pregnancy itself wasn't worrisome, my consumption of tuna was.  This was 1998 and the facts about how much toxic metal (among other things) was in a lot of the seafood we eat were only just starting to come out.  I knew to avoid eating certain types of fish but it wasn't until a year or two after I had Josh that the recommendations about adding tuna to that list came out.  Tuna.  Wait, tuna?  Oh, you mean the stuff that I ate at least once a week while I was pregnant with Josh because I had cravings for mac'n cheese with tuna on the side for whatever reason?  THAT tuna?  Yep. That tuna. 

So I think about this.  A lot.  And I feel guilty.

There's also the whole thing about the neighborhood we lived in possibly being toxic - specifically, the basements.

We were living in a suburb of Philadelphia in a brand new house.  It was a development on what had formerly been the playing field of an old high school.  Prior to that is where the history of that land becomes somewhat suspect.  But there we were, a nice neighborhood of about 2 dozen new homes, all with basements.  Within a couple of years, there were some incidents being reported of people (specifically young children and elderly people) falling ill while in the basements of a few of the homes.  It was enough to bring the EPA out to perform tests in everyone's basements and make the evening news.  Ultimately we were never notified of any conclusions regarding all of the tests that had been done and we moved not too long after this.  Why do I feel guilty about this?  Because after Josh was born I had a great deal of weight to lose.  Essentially, since I hadn't lost everything after Zach before I got pregnant with Josh, I had 2 pregnancies' worth to deal with.  We had a treadmill.  In the basement.  When Zach would go down for his nap each day, I would take baby Josh down to the basement with me, put him in his swing, and walk on the treadmill for an hour.  Every.  Day.  In the basement.  The toxic basement from hell. 

So there's that.

And let's not forget the genetics here.  We know from all of the current research that there is a large genetic component to autism.  There are some relatives on my side that are either autistic or have related issues.  No immediate relatives, but it's certainly there, floating around in the genes.  Can I help that?  No.  Do I still feel guilty about it?  Yes.  Because I'm human and I'm a mom, I can't help it.  This little being was my responsibility.  I often feel like I failed him.

There is also the question of have we done everything we could?  I touched on some of what we did as far as treatment goes in his Bio and in a couple of my earlier posts.  We tried a lot.  Conventional, unconventional, you name it.  There was not much we didn't attempt.  We got to a point though, where after several years, we simply weren't seeing much in the way of progress with anything we were doing.  The most progress he made seemed to be in regular old speech therapy and school.  So we stopped all of the "extra" things that didn't seem to be getting him anywhere.  Should we have persisted?  Should we have continued to try everything under the sun?  How do we know that there isn't something out there that could change his life dramatically?  We don't.  I just know that most of what we did made him exceptionally unhappy and did not produce much in the way of results.  I came around to the conclusion that accepting Josh as he is was perhaps our biggest challenge and really the only thing we could do for him.  I do not "embrace" autism,  as some out there suggest.  I embrace my son.  But I feel guilty every time I read other blogs or watch other parents' Twitter feeds about needing to find a "cure" and relentlessly pursuing every notion that comes along in order to help their kids.  There is so much out there on the alternative side of things that is un-researched, untested, unproven, and in some cases, just dangerous, that is being touted as the latest "treatment" or "therapy".  I personally don't believe that what Josh has is "curable".  Behaviors and symptoms treatable?  Some of them, yes.  But completely changing what has made him different from the rest of us in the first place?  I just don't believe so.  I also don't believe that all the cases of what is being diagnosed as "autism" today actually are.  I think that this is the reason some children respond to certain things where others do not, I don't think we are necessarily dealing with the same thing, despite similar symptomatology.

All this guilt is probably why I have such a hard time forcing issues with him.  I realize that this is just exacerbating some of his difficult behaviors but it's not an easy thing.  I truly just want my kids to be as happy as they can be, whatever circumstances they are in.  For Josh, being happy usually requires a lot of give on my part therein lying the difficulty.   I am not the kind of person who wallows around in guilt or self pity, I usually try to keep a positive outlook regardless of how stressful, difficult or just plain weird things are.  But inside, when he is frantic about something, there are those guilty feelings that bubble up to the surface and I think, well, maybe if I hadn't had him in the basement with me all the time or eaten so much damned tuna... maybe...

I try to focus on the good things I think I might have had a hand in with him.  I know that dwelling on the "what if's" don't help and only make things harder.  It's just not always that easy.

 

*for the record: Josh was tested for toxic heavy metals and came out negative.  Which should have put to rest my issues with the tuna.  However, I have not purchased nor eaten tuna since 2000, and actually turn away when I walk by it in the store.  I don't know why.  Probably because of the intensity of my anxiety over it when I found out I shouldn't have been eating it.  Like I said, guilt is not always rational.