Special Needs Mamas, Don’t Stay in the Hard

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This morning I was headed to pick up my son from his hybrid, half days of kindergarten. I thought about how tired I was, how much I was tired of shortened school days, and then my favorite song came on and snapped me out of my complaints.

Our day had started hours before the sun was ready to come up, when the house was quiet, and we could watch cartoons and eat cereal with leisure.

This was our life for so many years, two am wake ups for weeks, or even months on end. I swore in those days there was no hope for sleep, no end in sight.

Now these wakeups are much less frequent, and the quiet mornings aren’t so bad.

As I was driving I thought, what I wouldn’t give to go back to the days when I thought we were truly in the hard. To give myself the courage to settle in, and remember this is only a phase, he won’t stay here forever.

The days where there were no words, and no laughter, just me walking around talking to myself and questioning if he was listening.

I would re-assure myself that he was listening to me and understood every single word, and to keep talking.

The nights where pajamas were only for comfort, because sleep wasn’t and hadn’t been happening for months. I would tell her to ask for help, find big cozy blankets, and promise her that it does get better.

This first time we saw a glimpse into aggressive behavior, and I was afraid I wouldn’t find ways to help him through. I wish I could have told myself to remember that this isn’t him, love him through it, tell him you know his heart.

Knowing this season of hard is just a small bump in the road, none of this defines our future, our outcome.

Making the decision to send him to school where he can interact with his peers and establish a routine of what used to look normal, or keeping him home in a pandemic, seemed hard.

Deciding to try medication to hopefully ease his anxiety, or sit and wait and hope that it subsided on its own, even when we failed…that seemed hard.

Sitting at the IEP table for the first time, letting him ride the bus to preschool, going gluten and dairy-free, these all seemed too hard at the time.

Special needs parenting, navigating the world of typical children, it all is hard, but we can’t stay there.

We have to recognize for ourselves or find others along the way who will remind us that we have made it through one hundred percent of our hardest days so far, and our children are waiting for us to lead the way again tomorrow.

Written by, Amanda DeLuca

Amanda lives in Ohio with her husband, is a mom of 2 to Monroe, and Jackson. Her son is on the autism spectrum and is what inspired her to begin her journey through advocacy in the IEP process. Amanda is a certified Master IEP coach and proudly serves family both locally and remotely to empower them to come to the IEP table with confidence while working collaboratively with their team. You can learn more about her IEP consulting business on her page: Advocate.Out.Loud- Amanda DeLuca. In her free time she enjoys recording her podcast “Momming Autism”, teaching at her dance studio, and writing for her page Jackson’s Journey, Jackson’s Voice.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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