As I thought about the autism story I wanted to share, I couldn’t help but to reminisce back to when Layla was born fourteen years ago. After experiencing pregnancy and labor complications, I was happy to finally take her home a week after her premature birth at thirty-five weeks.
Like most parents, I had dreams of our life together – the things we would do, the places we would go, and the memories we would have from those shared experiences. When we received her diagnosis at 2 ½ years of age, those dreams began to shatter and as I saw them falling, I wondered… how we would ever be able to pick them up again and what they would look like? Fear became dominant in my mind as I wondered what her life would now look like with this Autism diagnosis. A diagnosis that I thought would define her.
Autism is so unique that every individual diagnosis has the potential to be so very different from another. My Layla indeed brings her own color to the spectrum, through which we are experiencing the rare and amazing young woman she is becoming. Those early years were hard as I focused on teaching and training her to function through her limitations while taking care of her physical needs. The needs she had as a little girl are transforming through her adolescent years and shaping up to be quite a journey mentally and emotionally. She is faced with new challenges – of teenage life and young adulthood. But I also see tremendous growth. My focus is shifting to preparing her for the journey into womanhood.
I am becoming acquainted with the loneliness this road can bring.
As her IEP changes because of growth, we must make choices that will benefit Layla, which may result in a school or program change. As a result, valued friendships and peer interactions have changed along the way. And with each new community comes the work of rebuilding the routine or finding a new one.
Despite that challenge, I am grateful that in every new season, God always has someone there for us, whether another family with a similar diagnosis, a phenomenal teacher just as dedicated as the last or a fantastic aide to help fill the void of the one I thought was so amazing that they couldn’t possibly be replaced.
The loneliness comes because the journey is so individual it can feel like no one may understand where we are at a given moment, but it also goes. Though no one can fully know the journey for all its twists and turns, there are people who “just understand”. And that helps. I am thankful for each time God has filled the voids that come as a part of this life. Layla’s needs can change in an instant, and as we make decisions on what’s best for our child, there are adjustments and the dynamics of relationships need to, yet again, evolve.
As Layla is transitioning, she is maturing. And so am I.
I am learning that peace matters more than almost anything. No matter how much money you have, how many possessions you’ve acquired, what accolades you achieved, or the number of places you’ve visited – without peace, what does any of it matter? Being at peace puts me in a healthy mental space for my daughter. Even though I had gotten good at disguising it, I’ve spent time in unhealthy mental spaces, and I know the harmful effects they can have. A chaotic mind can lead to a chaotic home.
I have learned it’s ok to eliminate things from our lives if they no longer serve a purpose. Though some adjustments have been a little harder to accept than others, they were all necessary and I’m learning to live with no regrets.
I have learned that wisdom comes from experience. As we gain wisdom, we may find that things we didn’t give much thought to end up working out for our good. Wisdom brings the realization that the things you once did may not now be appropriate for the current phase of your life.
I’ve learned that when my own well is dry, there is not much I can offer my daughter emotionally, mentally, or spiritually. There are times when creating a safe space for my daughter may require loving people from a distance. Her sensory needs require careful interactions as to not overstimulate her and throw her neurologically off balance.
I’ve learned that our levels of anxiety are directly correlated; a bad day for Layla can result in a bad day for me and vice versa. I am aware that she is always watching me, so I must be intentional about how I respond to stressful situations.
During the last 18 months of this transition, I’ve held this scripture close to my heart:
I have the right to do anything you say but not everything is beneficial. I have the right to do anything you say, but not everything is constructive.
I am still learning to implement what is necessary and constructive for my health, the health of my family, and those God has assigned to be in my life at this time. The simplicity of life over these past few months has given such clarity and focus and given me space to really spend quiet relationship-building time with God as He prepares my family for His plans in our lives, for our hope, and our future (Jeremiah 29:11).
This realization has led me to make choices for my family this summer, and specifically with my daughter that enabled us to intentionally do things together. This included activities that built and strengthened our relationship while allowing me to better understand her evolving personality and character traits. It matters that she is a part of what we are doing as a family, and not just along for the ride. Her enjoyment and involvement are as important as her presence.
If she wasn’t keen on a certain activity I had planned for the day, I asked for her input on what she’d rather do. This also allowed me to teach her how to advocate for herself, which will be an important trait for her to practice as I will not always be there to support her. I’ve spent my life advocating for her, but as I teach her independence, she needs to know there is value in her voice, and she needs to feel comfortable speaking up for herself.
Layla just started high school. This means yet another transition, which may come with a new set of challenges that I haven’t faced before. But I will take all the lessons I’ve learned, along with trusting in God as we go through this next season on our Autism journey.
I am still learning…learning to prioritize and be her mom unapologetically. I do not always get it right, but I try to do better each day. Because Layla is worth it.
My “Moms Night In” conversation with Sheera:
or watch on Facebook <a href=”http://” target=”_blank” rel=”noreferrer noopener”>here: