It was a trying weekend here. The kids got sick one after another and, as has been the case since he was the tiniest of creatures, Liam doesn’t deal with being sick very well. Since we got back from Quebec he’s been having trouble sleeping–more than usual–including waking up at 4am, then 5am, then 6am… sleeping on his bed, our bed, the top bunk, the floor. 4am breakdowns are a league of their own.
Friday night (early morning?), exhausted after finally getting Liam to sleep, I turned to Michael and said: “You know, sometimes I feel like if I could just love him more. Or better. Or different. That somehow… I could help him more.”
I know that sounds irrational, but when you’re exhausted and you feel invisible to your own suffering child, you hope for anything. Even if it means blaming yourself.
Having a child with high functioning autism is a study in contrasts, a constant mix of fear and joy and embarrassment and surprise. On his good days, he’s a friend, a partner in crime, a curious and brilliant espouser of poetry and surprising courage (he stood up to my uncle when he was teased about putting nail polish on, and did it anyway… with panache). On his bad days he’s maddening, violent, disrespectful beyond measure, and impossible to reason with.
And as a mother, I tend to reflect back on myself and his formative first few months. You see, I suffered from postpartum depression. It exhibited itself with extreme anxiety, panic attacks, and a feeling of general detachment from Liam. While the pregnancy was easy, the delivery (induced, then emergency forceps delivery) and first week (he was hospitalized for sepsis for ten days, and on a ventilator) was anything but.
I know I missed out on important bonding issues, and while oxytocin plays some role in autism there’s no clear evidence of the connection. But considering what I was going through at the time, I can’t help but wonder if he’d have been a little better equipped if I had been more present.
Loving Liam isn’t hard–he’s my son, it’s hardwired. But liking him can be very difficult. He wants to desperately control everything around him, and when he’s in his element it’s not a problem. But transitions and shifts upend him so much, and it can make things like going to the grocery store or changing dinner plans an absolute nightmare.
For me, his artsy and spontaneous mother, it’s been something we’ve had to work on day in and day out. At two, he told me that Santa wasn’t real because magic wasn’t real. He was absolutely resistant to knights and dragons and fairy tales, which were pretty much my gravy in childhood. He is resistant to most fiction, unless it’s realistic. He didn’t play house or draw pictures of people or play pretend. Everything in his world revolved around cars, taking things apart, or some combination of the two. To some extent they still do.
I was his primary caretaker for the first four years of his life. Liam didn’t have the “terrible twos”–it just progressively got harder as life got more complicated. When his obsessions and tantrums started getting worse, and pretty much taking the house hostage, we started realizing that something was different beyond his own quirkiness. And I can’t say that there aren’t days where I feel guilty that I didn’t love him the right way. That I didn’t try harder to meet him. That I didn’t put him in full time preschool or get him an earlier diagnosis. There are nights like Friday night where it feels so overwhelming that I can’t even breathe. Especially seeing his two year old sister flourishing with social cues and responding to logic (when I tell her why she can’t do something and she just sighs and says, “Okay…” and moves on).
I can’t change the past, though. And I can’t love him more than I already do. It’s the reason I keep going. But I can’t hold on to the guilt when I know I did the best I could. We got an early diagnosis, and we’ve worked tirelessly with doctors and his school and beyond to get him what he needs. But at this point we know we need to make some bigger changes. I can’t do it alone, but I can work closely with his new school. I can get a better view into who he is and what he needs.
And I won’t give up pushing fantasy and magic. Liam may still think that magic is silly, but someday he may see the benefit. He may realize that he can free himself of that fear by using his imagination to think beyond the limitations of his small world.