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Love, Lessons and Letting Go: 29 Years with My Son on the Autism Spectrum

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Today is Jonathan’s birthday, marking 29 years of celebrating the wonderful young man he has become and will continue to be in the years to come. It is also a celebration of the journey that has brought us here. Raising a child with autism is a road less traveled by most parents. Looking back, I realize that we both encountered our own challenges and triumphs along the way, received support in countless ways, and navigated our own self-discovery. So today is not only about celebrating another year but a lifetime. And while autism may not be a familiar road to everyone, it has taken me to places that will remain forever in my heart.

Like most journeys we embark on, there is often a familiar path or some assuredness of the destination. Autism has a roadmap unique to each individual. What I never considered was how that map would impact me in so many ways, learning to steer and navigate my own direction. So as a parent of 29 years riding shotgun, I’ve learned and continue to learn with each passing year. This year is no exception and as I reflect over the years, the best lessons have come from challenges, triumphs, support, and self-discovery. And always, love. 

Loving Jonathan has never been a challenge. My need to feel loved by him has at times been the bigger issue. Often, I wondered if I truly meant anything to him. I think the need to hear the words was part of it and given Jonathan’s limited verbal expression, I began looking for that validation in other ways. Once I challenged that assumption, it became more obvious that Jonathan had a love language all his own. Not often with words but his actions. I recall the many times he would stop and help me make my bed, carry the laundry basket upstairs, or assist me bringing in the groceries. Delivering my purse or keys as I headed out the door or my morning coffee. And two of my absolute favorites, giving me a kiss on the top of my head or curling up next to me on the couch and putting his head on my shoulder. Just a few of the countless ways he’s expressed his love and caring over the years.  No denying an I love you when the actions speak in place of the words.

There is no greater triumph as a parent than watching your child living their best life. At first, I felt autism would diminish that victory, but over time, that opinion faded. Of course, there have been numerous struggles over the years, but as I look back, there are far more happy, empowering, and triumphant memories. Like Jonathan’s very first day of kindergarten and nervously waiting for the phone call from his teacher to see how his first day went. Then hearing her voice on the other end saying, “You would have never known it was his first day!” Years later attending his middle school graduation and watching as he went up to accept awards for Most Improved Student and Outstanding Citizen. Wondering if high school would prove to be too much for him only to witness inclusion with his peers at dances, sporting events and the classroom.  Remembering the look of pride on his face as he accepted his first paycheck.  Validation is important to all of us so don’t forget to take those victory laps along the way. They will remind you of the possibilities that exist even when you encounter challenges. 

What have I discovered over these many years?  More about myself than I realized. As parents, we are driven to achieve outcomes in pursuit of what others expect from our children. It’s easy to lose sight of the individual and quite frankly ourselves. What one learns about themselves is just as important as what one learns about loving and parenting autism. Yes, the years have taught me a great deal about my son and autism. But as he has gotten older, I recognize we are both learning more about ourselves as individuals, not just a parent and child with autism. A path of self discovery to guide us now as we journey in separate ways. Jonathan’s own self-discovery of independence, exploration and authenticity. Now that he’s no longer living at home, it’s an opportunity for him to explore who he is, what he wants and how he wants to live his life. It’s a beautiful thing to witness as I step back and watch from a distance. Releasing my hold on the little boy he used to be and embracing the man he has become.  My own self-discovery was finding myself outside of being the parent of autism. Now a huge space has opened up, one I never anticipated-life outside of autism.  Discovering a new way of being that isn’t centered around the daily needs of my son. Ironic how we look with hope for this day to arrive and when it does we are often unprepared. 

Support is such an important part of this journey but by not asking for enough or any at all the road can become not only bumpy but treacherous. I was an egregious offender of this one. For some reason, we seem to think we are in this on our own. While at times it may feel that way, truth be told, support is there. But we need to ask for it. Looking back, there have been so many people aiding and assisting me and Jonathan. From day one my husband and my daughters, who are my staunchest supporters to this day. Family, friends, neighbors, teachers, therapists, doctors, and even kind strangers. I often dressed myself in armor that sent the message I didn’t want or need help. Gradually, that suit gets too heavy to carry alone. I learned that asking for help was not a weakness, but a strength. When you receive support your ability to give it increases. Jonathan has needed support often throughout his life and gladly welcomed it. He taught me to do the same. 

So today isn’t just a celebration of Jonathan’s 29th birthday, but what those 29 years have taught me about myself and my son. Remembering the challenges one faces can lead to triumph. Recognizing the significance of self discovery as an empowering tool for exploration and personal growth. And most important of all, garnering support is just as important as giving it, especially when we need it the most. 

Above all else, I will never stop celebrating the journey with my son no matter where the road leads us.

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