How We Got Here: The Beginning

When Marshall was 8 months old, I knew he was autistic.  Call it mother’s intuition, call it overreacting, call it what you will: I knew.  His milestones had been a stitch delayed up to that point (rolling over was late, sitting up was late, hand eye coordination was poor) but at 8 months he began rocking and flapping his arms.  Now, to most people, these are just normal baby things, and for some babies they are—but I knew there was something bigger going on.

At his 6 month well check, actually, the nurse practitioner raised concerns that he wasn’t sitting unassisted and that he didn’t reach for the popsicle stick she dangled in front of him. (I know that’s not the medical term, but let’s call a spade a spade.  No one goes to craft store and buys a bag of tongue depressors for their projects).   My fear of the truth and desire to bury it (out of sight, out of mind, right?) led me to switch pediatricians at once.  By the grace of God, this was a great decision anyway—we love our pediatrician and I needed his laid back style in that season. 

I’ll never forget when 8 months rolled around and my fears became more concrete.  When the rocking and flapping continued to increase, it dawned on me that there were other red flags, too.  Even at such a young age, Marshall hated unstructured social gatherings or unexpected change.  He did great at church every week (predictable, music-filled) but didn’t care for parties or gatherings at people’s houses.   To be honest, I didn’t realize how tense and burdensome this was until we had Joey, and I realized how easy a typical kid was in those environments. 

Dealing with the reality of who Marshall was, trying to rise above my fear, and being a first time mom was exhausting.  He rocked so much in his high chair that it was difficult to feed him.  We tried everything, and at 8 months moved him to a booster seat instead.  Diaper changes were a nightmare, so much so that we resorted to changing him while he stood.  (Turns out kids with sensory issues sometimes HATE being laid down on their back.)  He rocked himself to sleep each night in his crib, and would rock whenever his back was touching anything.   He spoke less than other kids, engaged less with toys, and was content to sit in one spot without any effort to get up and go.  

The thing is, I can tell you all of these things with calm confidence now.  But in the moment, I was afraid to say them aloud for fear that it would make it true.  I was embarrassed that I didn’t know how to handle him, or help him develop faster.  Isn’t that silly?  Being removed from the situation for nearly five years has given me a lot of distance and clarity, but in those moments the fear was overwhelming.  The reality was devastating.  And the unknown was paralyzing.

I may have admitted my fears to Wes, but for a long time I kept them wrapped up in the deepest corners of my brain, pinning them in and shutting them down however I could.  After all, I was a first time mom—was it something I did?  Something I was doing?  Something I was failing to do?  When you’re a first time parent, you think your reality is the one everyone else experiences, too.  It’s easy to feel like parenting is hard because you’re doing it wrong, not because of any factors outside of your control.

I hated every well-check, and struggled to enjoy play dates or being around other kids of similar ages.  Life was challenging in ways I didn’t want to admit, and the comparison to other kids was constant, no matter how I tried to quiet it. 

At some point along the way, between 8 months and a year, I admitted my fears to a hand full of people I knew I could trust.  Two of them quietly agreed that I could be right.  Several others immediately told me he was fine-- not to worry!  There’s no way he was on the spectrum, he liked people!  There’s no way he was autistic—he smiled and made eye contact!  To be honest, both responses, the understanding and support and the disbelief and insistence that he was fine were very helpful, and comforting.  Those who dared to travel the road of what if’s with me gave me peace that I wasn’t alone, and that I wasn’t crazy for thinking these things.  And those who insisted that he was fine lightened my load because they saw him as Marshall first, saw his strengths and his beauty and his wonderful nature first, and barely noticed his shortcomings and struggles.  They gave me hope that regardless of what struggles we endured or what label he would inherit, he would be all right.  We would be all right. 

Reliving those moments and reflecting on that season is strangely comforting now.  It was really hard, and I’m not sure that there’s anything that would have made it any easier.  The truth can be hard and brutal; it can take your breath away and bite your skin like a gust of wintry air.  Breathing in the reality of who Marshall is, one breath at a time, at our own pace, has been an experience unlike any other.  Looking back at where we were in those early months and years and where we are today is pretty remarkable.  Marshall is one of the most fascinating people I’ve ever met, and he continues to surprise us everyday.  

The Lord knew who he was when He created him, and He knew who we were too.  This journey has awarded us patience in seasons of waiting, joy in small victories, growth in our relationship with one another and with the Lord, and leadership in parenting.  This experience has made me a different teacher, a better friend, and has forced me to live in the moment, making each decision as it comes.  I won’t tell you I would have chosen this path or that I would choose it for anyone else, but I can tell you that it’s a path worth walking with my head held high.  Being Marshall’s mom has become part of my God-given identity, and I wear it proudly.   

What part of this resonates with you today?  Are you worried about your child in a way that others aren’t?  Are you facing a reality you wish wasn’t true?  Are you concerned about a friend’s child, and you’re uncertain how to proceed?  Know this: any act of kindness, however small, is never left unused.  Don’t have the right words? Ask your friend how she’s doing.  Compliment something you love about her child. Open the door to a deeper discussion, and leave it propped open if she doesn’t walk through it right away.  Distancing ourselves is not the answer, whether we are the ones living in fear or those watching from the outside. No matter how hard it was to bring Marshall around my friends and their babies, we just kept doing it.  We picked up our feet and kept going, even when it felt like normal life events were hikes up a muddy hill.  Community has made our journey lighter.  It has helped us to keep our heads up in the face of scary realities, and it has exposed the truth about unwarranted fears. 

Whether you’re raising a child with special needs or not, parenting is hard and can feel isolating at times.  Fight it.  Refuse to give in to the illusion of safety by hiding at home or from others.  Call a friend.  Break the silence.  Link arms with the ones around you and speak your fears aloud—it won’t make them any truer, trust me.  Speaking our fears and bringing them into the light of community can be a game changer— and it might just be what you need to lighten your load.