a little bit about my emotions

Sometimes I forget that Liam's PDD-NOS is happening to him, not to me.  As a mother with hopes and dreams for her child and as someone with desire to have things simply be normal, I get lost in selfishness and feel like this is happening to me.  One day when Liam has enough language to talk to me, I want to find out how his conceptualizes his differences.  For today though, I need to talk about how I feel.

The past 6 months or so, I have had three continual emotions swirling around and maybe if I acknowledge them, I can finally push them aside.  These emotions are: confusion, loss of hope, and sadness. 

Confusion came first.  How did we find ourselves here?  How did my son, my perfect son end up with a developmental delay. For those that haven't followed Liam's life story.  He had a rough start:

with APGARs of 1, 7, and 8.  But then everything was textbook.  He rolled belly to back at 2 months and back to belly at 6 months.  He sat unassisted at 5 months and started crawling at 8 months.  He pointed at 8 months and clapped at 9 months.  At 12 months, he had several words.  I even blogged about it here: Liam's first words  At 14 months, we started dealing with awful tantrums, and everyone told us it was normal.  We were told that toddlers are difficult and boys are even harder.  I researched Sensory Processing Disorder, and everyone told me that it is part of the trend to label everything and every kid.  At Liam's 18 month well-baby visit, the pediatrician said his word count was at the high end of normal, and she was surprised he wasn't yet using two word sentences.  Then Ben was born when Liam was 19 months, and soon Liam's development veered off the normal path.  How does a child develop normally for so long and then diverge from the path of typically developing?  How does a child with advanced language skills end up 10 months behind?  Liam is social, and at his 2 year well baby visit when I asked for a referral to a developmental pediatrician, his pediatrician said he didn't need one.  "His eye contact is excellent; he engages with me."  Autism Spectrum Disorders are not linear; it is not a yes or no, but rather an amount.  I still hear how social and engaging Liam is, but now it is phrased as a strength and something therapy will capitalize on.

In alot of ways, I have moved past the confusion, as how we ended up here does not to help Liam.  Once I heard the diagnosis, I just wanted to jump in and start as many interventions as possible.  However, the why and how do matter for Ben.  I want to avoid the same path Liam is on for Ben, but do not know how to do that without knowing the why and how.  This brings us to my next emotion.....

I have a loss of hope.  I watch other mothers celebrate milestones and I feel no joy.  Ben plays peek-a-boo and tries to clap, and I am left to wonder whether he seems to be developing normally now, but will be diagnosed with a developmental delay down the road.  Ben has been late with alot of physical milestones, and I no longer can shrug and talk about individual differences and every child developing at their own pace.  As I watch Ben grow, I know that an autism spectrum disorder is a real risk for him.  According to some information, Ben's risk of being diagnosed with an autism spectrum disorder is 1 in 20, as compared to the 1 in 70 to 1 in 100 odds (using the most recent CDC data) of someone without an older sibling on the spectrum.  With a 5% likelihood, it is hard to feel hopeful. I watch other moms struggle with difficult children and I watch other toddler boys have difficulty engaging, and my mind immediately goes to autism.  I don't have the hope of other moms that this is just a stage.

A loss of hope results in alot of sadness.  Sadness for not having the same parenting experience as my friends.  Sadness as I watch other toddlers develop romances and friendships while Liam watches from a distance or simply engages by pushing, tickling, and running.  Sometimes I don't want to even talk to other parents or even go on playdates, as my path is diverging from theirs.  Sadness over the loss of words I experience when they ask me how Liam is doing.  I usuallysimply say fine as I have seen the polite nodding when I go in details about the various therapies.  Sadness over the life that Liam and I may never have.  Sadness when I meet other parents with kids on the spectrum who tell me that their child is doing wonderfully and is in regular school.....but then outline all the things they stiill need to do daily and weekly to ensure that their child succeeds. 

I have mentioned the movie "Autistic Like" before, and Graham's mom put into words exactly how I feel.  You can red more about what Jennie does here:  Jennie

My Disappearance — by Jennie Linthorst

The conversations in my mind

have grown too big, too intense

for the grocery aisle,

or the sandbox in the park.

I am mapping out miracles,

creative interactions,

scheduling brain scans, special meals

and blood work;

opening my door to therapists at seven am,

and pushing my true thoughts

deeply away.

My silence is trying to grasp

how to find time for a marriage

that has been placed in the wings

while my son’s life

is choreographed on center stage.

My silence holds possible dreams

of a normal life;

with family vacations, car trips,

and time not scheduled.