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What does it mean to have a child with special needs?
Sometimes it feels like an overwhelming force, but other times, I am reminded of the gift that it truly is.
Over the years, the overwhelming fear and uncertainty have been replaced by gratitude. That’s not to say that I don’t still have fears about my son Abram’s future or experience days more difficult than I feel equipped to handle, but I’ve experienced a shift in the way I think about autism.
I’ve reached a place of gratitude for how our journey with autism has been better than I feared initially, and for how this journey continues to make me a better parent and person.
I learned to not take anything for granted.
When I was a first-time mom with my older son, there were so many milestones I took for granted. From eating and sleeping to talking and potty training, I was confident that we would reach each milestone and fall into a comfortable routine.
Raising Abram has certainly been more challenging. I realized sleep is a gift and that not every parent will have the freedom to sleep without constant fear for their child’s safety. I learned how to fight for simple and routine things and appreciate every achievement, regardless of when or how it arrives.
With Abram, I grieved the milestones that I thought would never come.
I envisioned a tear jar, where I stored away the crushing emotion that I couldn’t let him see. It was a long time before I heard Abram speak a seemingly simple phrase: “I love you.” How many times had I taken that phrase for granted from other loved ones? Now when I hear it, my tear jar empties and I am renewed every single time.
I learned how to be patient.
No one who knows me will describe me as patient, but I have my moments now. I used to pray for patience. Then God gave me Abram.
I learned that patience isn’t something that I would find or be given; I am driven by my intense love for my children to work and create patience. It’s an action, not a feeling, and it takes work.
I realized that Abram’s meltdowns are intensified by me, by infusing my own frustration and aggravation into the situation. I quickly learned that I can’t fake calmness or mask my emotions; Abram can feel the energy I release and will feed off of it, so my calmness has to come from the inside.
I center myself by visualizing a cool, crisp, serene, and slowly moving river that allows me to let everything go. If we’re late, we’re late. If we miss an appointment, we’ll make another one. I learned how to focus on what is important and what I can control in the situation. When I stopped getting angry at Abram’s meltdowns and, I’ll admit, at him, everything improved. I learned that my patience led to less intense meltdowns and that we could often head them off with happy distractions.
I had to own my emotions and actions and become a better parent for him. Despite my prayers, best intentions, and love for my husband and children, no one but Abram could have taught me how to change.
I learned the power of hope.
Very early on, Abram’s pediatrician made a simple statement: “It gets better.” I didn’t believe her, but I really needed it to get better, so I had to at least have hope.
It’s hard enough parenting a two or three-year-old, and it’s exponentially harder when there is a diagnosis involved. Many years later, I’m grateful that I can attest to that power of hope and share it with other parents. My “better” may look different than yours, but there is a better.
With time, you really get to know your child and their needs, you develop a bigger and stronger support system, and you realize what’s important and how to focus your physical and emotional energy on those things. I share my hope that every parent reaches a point where they can find the positive in each situation and celebrate every achievement, large and small.
For me, each new milestone and “I love you” renews my strength. I am grateful to Abram for teaching me how to be a better parent for each of my children and for how to truly appreciate the simple and routine. Because of this gift from God, I am able to help so many other families and kids just like my son with Abram’s Nation. Don’t lose hope, parents and caregivers, with a little patience and a lot of hope, we can navigate this journey. It gets better.