Coming Up For Air

The day that we finally received a diagnosis for my son was the day that the flood gates opened.

After eighteen months of second guessing myself, of my pediatrician telling me that I was just being an overprotective new mother, I finally had the confirmation that I needed.

Not that I desired.

Not that I wanted.

I physically needed it.

I finally had the affirmation that there was something genuinely out of the ordinary going on with my child.

I’m not sure if you, whoever you are, have experienced this type of affirmation; what I can tell you is that it feels like coming up for air after the rip currents pull you beneath the surf for a brief second.

One minute, your belly is brushing the swirling wet sand as you struggle to be seen and break the surface. And the next, the words “your child” and “autism” are the breath of salty air that you were reaching for.

It by no means makes the affirmation “easy” by any definition.

For me, several minutes of hard gulping and forced eye contact with the developmental pediatrician ensued before I finally gave in to the prickling threat of tears behind my eyes. And then I stood up, and pulled myself to an opposite corner in the far side of the room, trying to get hold of my breathing and steady myself in the process.

My husband and mother-in-law were with me in the room as well, but in those quiet moments, I was alone in the sand again; the last eighteen months of my life slipping between my fingers like receding sand back into the tides.

Now in the present day, we are in the middle of a global pandemic.

In less than a month, nearly three years after his initial diagnosis, my son will be beginning his second full year at his early intervention preschool. In the three year time frame, he’s seen two separate speech therapists, soon to be three; two occupational therapists, and one ABA specialist before she came and left our lives.

It has been 148 days since my son last had any of his basic therapy classes that he was already lacking in, given his initial evaluation. Trying to encourage him to engage in virtual instruction has been nothing short of impossible for both me and his father, as his parents, and his babysitter.

Half of me is eager for him to resume in person instruction again; half of me, not so much.

My heart aches for the lost socialization that he has missed out on, and for all of the hard changes that he is going to be facing.

His old bus driver recently passed away in a motor vehicle accident, and it will be a hard adjustment for him when he boards his van once more.

In addition to new social distancing guidelines, he will also be strongly encouraged to wear a mask; I can request an exemption, but will formally need to address this in an emergency IEP. I am not opposed to my child wearing a mask for his personal health if he were able to wear one, but his sensitivity to touch makes him hyper anxious to the feel of straps looped around his ears, or his nose and mouth being covered.

To some of you, this may sound like nothing but me making excuses. To those who understand the unique struggles that come with raising a special needs child, then you understand this all too well. We rise and we fight to make sure that our child’s voices are heard or at the very least taken into account in a world that would rather pass them by – and we try to make them as comfortable as we can as they navigate through it at the same time.

It’s a delicate balance.

And I try to prepare myself for these new challenges, writing my concerns and thoughts down for my son’s follow-up in a few weeks. I think of the home-based therapy that we’ve been trying to give my son here, in the evenings when my husband and I are home from work, and on weekends; the fruitless attempts of potty training. I think of all of the sounds and babble that Rory is making, his attempts at certain words becoming clearer every single day and despite the small victories that we’ve been noticing… I still feel like my son, as well as many other children like him, have been left behind.

And I wonder how long it will be before we have the opportunity to catch them up?

How long will it take for us to come up for air again, after struggling to break the surface once more?

Written by, Teagan Kirk

Teagan is the mother of a beautiful little boy named Rory who just so happens to have autism. She lives in central Pennsylvania with her son and husband, Chad. A full-time working mother, she enjoys writing, advocacy, wine, and graphic design in her spare time. She hopes to organize a support group for parents/caregivers of individuals on the autism spectrum in her local community.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.