Life after an "A" word diagnosis

The above is a video of Liam "stimming." He is playing with a set of lacing beads that are shaped like cars, but he isn't lacing them and isn't even pretending they are cars. Instead, he is lining them up and humming. This is self-stimulating behavior known as "stimming." You can also see how brief his eye contact is in the above video.

Before Liam was diagnosed with PDD-NOS, Dave and I tried to avoid using the word autism and called it the "A" word. It seemed like a dirtier word than any curse word I could imagine and I think we were both afraid that if we said it, Liam would definitely be diagnosed as autistic. On November 3, 2009, a developmental pediatrician confirmed what we already knew; Liam is on the autism spectrum. He was diagnosed with PDD-NOS.

I haven't blogged about his diagnosis for several reasons. The first is that I am not comfortable with the world labeling Liam, as he is an amazing, sweet little boy who trascends all labels. There is a chance his diagnosis will change, and I don't want others judging him based on what they *think* PDD-NOS means. The second reason is that I have not yet come to terms with how I feel about the diagnosis. The third reason is that I have been so busy living it that I haven't had the energy to write about it.

I have had a rough couple of days lately that have resulted in lots of crying. I have been working my butt off to try to help Liam. I feel like I am constantly running in hundred different directions, trying to cover all bases. I am emotionally drained. Liam is on a sleep strike, so when my physical energy ran out, I had no reserves to keep my emotions from crashing.

I have gotten Liam enrolled in the right program in the military that gives him access to money for ABA therapy, which is considered to be the "gold standard" for autism treatment. I also try to incorporate Floortime principles in my play with Liam. I literally feel like my interaction (or failure to interact) will save his life (or will ruin his life). I have pursued a referral for outpatient occupational therapy and he is on a waitlist and will start in March. I just started the process for a referral for outpatient speech therapy, and it will lead to another waitlist. I have had Liam's hearing evaluated by an audiologist and his hearing is fine. I have had Liam evaluated by an ENT for fluid in his ears, and he'll have surgery to be get tubes next week.

I know I have accomplished alot, but I still am afraid it isn't enough. I hurt as I watch Liam interact so differently from kids his age. I wonder how we got here; Liam hit all his milestones on time for the first 18 months. Where did things go so wrong? I wonder what normal even means. I had deluded myself into thinking that setting up the therapy would be the hard part, and then things would fall into place. But as I have set up all this, Early Intervention has reduced his hours, and Liam has replaced sensory defensiveness with sensory seeking. I am slowly learning that this will be a daily battle that will never end. I will always be chasing something I cannot quite seem to reach, and I will always wonder if I am making the right choices for Liam.

Sometimes I forget that not everyone experiences my reality, and likewise I wish there were a way to make others see what I experience as I stumble my way through these early days after the diagnosis.