Finding Beauty in the Hard
My name is Amy Lou. I am a mother to 4 incredible boys. They are my delight. I feel driven to write this blog primarily about my mothering journey with my eldest boy, Isaac. He was diagnosed with autism at the age of 3. He is now almost 13. For over a decade, we have loved Isaac and lived alongside profound autism. Isaac’s autism shapes the culture of our family. We are given a gift in him—not only to grow alongside him, but to grow close to Jesus Christ as we trust him with Isaac and our family’s future. This blog will be about Isaac—the experiences of raising a profoundly autistic son with his neurotypical brothers, and my personal journey as his mother. It will be about finding beauty in the hard. Every day, there is beauty. And that beauty becomes especially poignant as it exists within the reality of our daily struggle.
I am a woman of faith. I love Jesus Christ, and will talk of Him often. He is my source of strength. He prepares the way before me and my family—a way to wholeness and freedom. He holds us as we weep and rejoices in our delight. Because of Him, I know that even the most difficult seasons of life can be used for our good.
My goals for this platform:
~I hope that my sharing will be a way to connect with others who live in this unique space of profound autism. Being the caregiver of an individual with this kind of disability often feels isolating and lonely. Some of the challenges families like mine face are not openly talked about or understood because they are hard to talk about and hard to understand…for all of us. I want to welcome those in similar situations that we all may feel hope in the difficult day to day caregiving of these precious humans.
~Those close to us have expressed curiosity about autism and a desire to learn more about our son. Their desire to support, love and care for him alongside us has been truly touching. Thank you for your love. Thank you for asking questions and listening. Thank you for your ideas. Thank you for being there for him and us in ways that only you can. Perhaps this blog will help to further open the doors of understanding and dialogue. If you have topics/questions you would like me to address in future posts, please let me know! I will do my best to address them from my own perspective and personal experiences.
~I hope to spread general awareness of profound autism and the impact of this diagnosis on individuals and families.
~For myself, I hope to find healing in sharing this journey with you.
~And, most importantly, I hope my readers, whether personally connected to autism or not, may find strength in the Savior as they read, for life continues to weave unique patterns of joy and sorrow for each of us. Join me as we find beauty in the hard.
Jesus Christ “gives unto [us] beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness, that [we] might be called trees of righteousness, the planting of the LORD, that He might be glorified.” Isaiah 61:3
A brief introduction to US
Isaac was born at 34 weeks and 4 days, a tiny squirming babe at just under four pounds. He quickly became my whole world. Brian and I lived in Singapore at the time of his birth. It was a time of adventure and newness. Newly married, a new land, new languages and foods and music and culture. And now a new babe. I loved him fiercely and found so much purpose in my new role as mother. His first smile brought a new depth of delight into my heart. The only way we got any sleep was if he was snuggled in my arms. I held him and held him and held him and savored every moment of that sweet connection I had with him.
When Isaac was six months old we moved back to the USA after Brian accepted a post-doctorate position at Harvard. We quickly fell in love with the beauty of Boston. I welcomed the four seasons back into my life with great vigor, celebrating every shift in the land and air with awe—something I had deeply missed while living on the equator. I think back on this time with great fondness. With Brian hard at work, most of the time it was just Isaac and me figuring life out together. We frequented Wilson Farms—a local treasure—and never missed a visit with the ugliest llama I have ever laid eyes on. He was allowed to wander about the farm and I was always a bit shocked by his plethora of crooked teeth poking out of his large mouth like yellowed protruding dominos. Isaac would gingerly touch this llama on his head with my encouragement and then we would go buy muffin tops and sweet nectarines from the farmers market. Oh how I loved that place.
When Isaac was about 15 months old, Brian and I were surprised and thrilled to find out that we were expecting twins! Two more boys! The sweetest time of my life was soon about to shift. No longer would Isaac be my only. I remember weeping a few months into my pregnancy. I’m sure hormones were at play…..but although I was elated to be having twins, I truly mourned the loss of this tender season of just Isaac and mommy. Also during this time Brian and I became more aware of Isaac’s developmental delays, stimming behaviors, sleep struggles, special talents, and food sensitivities which continued to solidify my suspicions that Isaac was developmentally and neurologically different. We worked with early intervention services often and added other therapeutic services like speech, music, play and OT from a very young age. We met so many kind and loving professionals and welcomed them into our home to work with our son. Isaac delighted them all with his profound musical ability and winning grin.
The twins arrived, and then we had three. Busy, beautiful life. When the twins were nine months old, I had the thought to take a pregnancy test one afternoon. Brian had taken our babies to the park so I could have a minute, and in that minute I found out that our trio was soon to become a quartet. Four little boys, ages 3 and under. What a wild ride it was. But, I look back on that crazy with such gratitude, my heart could burst.
When Isaac was just 3, we received an official diagnosis of autism after being strongly encouraged to pursue a diagnosis from his music therapist, Mio. The diagnosis did not surprise me, in fact I felt a great sigh of relief. I had been mothering Isaac differently that I saw my friends mothering their toddlers, and finally I could explain why Isaac’s needs were different using a concrete diagnosis rather than trying to explain my “mothers intuition.” We loved our quirky, musical, snuggly boy and fearlessly moved forward with our 4 tiny humans in tow.
Brian got a job at the University of Illinois, and Champaign became our next landing spot. We found a perfect little home with a fenced in yard that had a hose. Our home in Boston did not have a hose, and I remember wishing I didn’t have to fill my little wading pool while running back and forth from our kitchen to the backyard with bowls of water all the while trying to keep track of my tiny humans. My wish had come true because our new home did indeed have it’s very own hose. And a tree for shade. And a basement that we converted into the most magical play den there ever was. It was a good home.
As Isaac grew, it felt like autism became more complicated. Luckily, Brian and I matured as the complications mounted so we were better equipped to handle the curve balls. Autism, for us, has always been a shifting landscape of challenges and solutions which morph with age, and development, and resources (or a lack thereof). And this is how life continues to look although puberty has proven to be the most challenging season to date.
Isaac is a talented, loving, and powerful human. He loves Sesame Street. He now has a “low voice” (as he calls it) and when he sings, his voice resonates with depth and perfect pitch. His voice is one of my favorite sounds in all the world. Isaac loves the countries of the world. He knows them all and speaks their names as if they were old friends, each with.a special place in his heart. He knows the location of each treasured country, every capital and flag, and can identify a country just by its shape. Isaac can play a piece of classical music by ear. Each harmony and rhythm has purchase in his mind, and he has endless space to hold them all. He finds great joy in acapella music, and has bonded with his dad over Brian’s many acapella arrangements from his college days. Our days look different now as he gets older. The shifting challenges and solutions continue to ebb and flow. Sometimes the solutions seem harder to come by as the challenges mount. But we ride the tide and savor the moments of connection finding beauty in the journey and trusting in the goodness of life now and forever.
Isaac is a joy. He is good. He is ours forever.
Note: I am hoping that over time, this platform will become an interactive space. Please feel free to comment! Ask questions! Share your own experiences. I hope it can be a space for connection and healing whether or not you have a direct link to autism.
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Thank you for being here!
