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What Mother's Day means to me as an autism mom

This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). CHOP is an Autism Speaks Autism Treatment Network site. Kim is also the author of a blog about her two children with autism at autismmommytherapist.wordpress.com.

I can’t believe I’m saying this, but this Mother’s Day I will be mere hours away from being a mom to a teenager. How this happened when I’m not a day over twenty-five is unfathomable.

Mother’s Day is always a high holy day chez McCafferty, landing as it does in the midst of the trinity of Mother’s Day, my eldest son’s birthday, and my wedding anniversary.

Yes, Hallmark loves us this month.

But although I love celebrating my anniversary (happy that my spouse and I still like one another), and adore celebrating my severely autistic son’s birthday (birthdays last a month around here), I admit I have a definite soft spot toward Mother’s Day.

After all, there’s the day before I became a mom, and beyond the great divide, every day after.

I admit, having an autistic son (and later having another one, but that’s for another day) was not even on my radar when I was pregnant with Justin.  I was much more worried about the ridiculous number of pounds I’d gained (yup, almost forty on my five-foot-two frame, which at one point put me not that far from my husband’s weight) than any developmental disorders he or subsequent children might have.  After all, I’d avoided sushi and alcohol for nine months, and since he was a much-wanted IVF baby treated my body like a temple so that his pre-world habitat would treat him well.  I was much more curious about his gender, since we carefully averted our eyes at every ultrasound.

I had no idea what was coming.  And as I look back I’m grateful, because it took months for us to suspect he might be developing differently than other babies, and almost another year from that point before he was diagnosed.  I got to ease into realizing how different our lives would be from what I planned (and being A-type, I will share with you that it was quite a plan).

At seventeen months I traded worrying about what pre-school (or hell, college) he’d get into and immersed myself in the world of ABA, gluten-free diets, the insurance quagmire, and occupational, physical and speech therapies.  I threw out “What to Expect the Toddler Years” because it held no relevance to my beautiful boy, and seemed to imply we were both failing at this mother-son dance.

We were not.  He was not.  And what I’m also grateful for is my ability to embrace a new version of his impending life fairly quickly, where each milestone no matter how small was reveled in, and where I made sure I never missed a smile or an instance where we strengthened our unbreakable connection.

To be perfectly honest there are times where having two autistic kids has been exhausting, frightening, and depressing.  I have at times felt completely overwhelmed, inadequate to parent two special needs boys, and tired.

Perhaps I should elaborate.  I mean very, very tired.

But over time the exhaustion and the fear have been mostly replaced with immeasurable pride in my boys, and downright awe at how my severely autistic son navigates his world, inspiring his family, teachers and everyone lucky enough to know him with his tenacity of spirit and his deeply compassionate heart. Autism has forced me to look at boy’s progress differently, to revel in their accomplishments even when I feel it’s all a little too much. 

And when I’m overwhelmed, I recall these gifts.

I ponder the way my eldest son embraced his teacher during their post-Hurricane Sandy reunion, refusing to disengage from her embrace for the better part of an hour.

I conjure up the image of his brilliant smile when his neighborhood “girlfriend” comes to call, his delight at her presence.

I think of the photos from the slideshow we saw at his school’s gala, the ones where he is so intensely focused on his teacher, so eager to learn.

I remember his pride at learning to “steer” his horse, how he sat straighter in the saddle each time he went past me, his proud gaze locking eyes with mine.

I feel gratitude for the boy who tolerates his brother’s exuberant nature, who accepts the hugs and tugs that comprise his relationship with his younger sibling.

I envelop myself in the glory that is his “nighttime self,” the satisfied grin and kiss he bestows on me every night prior to slumber, letting me know he did indeed have a good day.

I remind myself how hard he has struggled to speak or communicate via iPad, and how these skills continue to emerge.

I recall the first time I held him, this hard-won, longed-for babe, and the way his fingers grabbed mine so tightly I thought he’d never let go.

And I will continue to hold on while simultaneously pushing him to be his most independent self, pursuing my goal for my boy that he will always remain happy, productive, safe.

My love to my youngest son, and to my eldest who made me a mom, my most important role yet.

Happy Mother’s Day to all!

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.