The Beauty and his Beast; Parenting Through the Spectrum
Autism changed my life.
Just like the story of the Beauty and the Beast, my son's diagnosis of autism provided lessons even Disney can't deny
the value of kindness over superficial qualities
that perfection is boring
love conquers all
its totally cool to be different
happily ever after doesn't need to look a certain way
I am a mom of an 18 year old, non-verbal child living on the spectrum. He is my only child and he is ALOT... he takes all of the space in the room and in my heart. He turns into a rockstar at night, requiring little to no sleep and jamming to music while he paces up and down the halls. I often tell people that he is the loudest non-verbal human on the planet. He will let you know he has entered the room, either by flipping the lights on, verbal stemming (loud repetitive sound) or tapping on things. He has this look that he gets every so often that lets you know that he is up to something. He gets that from me.
Have you heard this yet? When you meet one child on the spectrum, you meet one child on the spectrum.
Our story begins with an uneventful pregnancy and elation that at 30 years old I was finally starting a family with my high school sweetie. My son hit all of his milestones, was classically funny and loved books and knew all of his ABC. I parented by the book...you know that big old bible of a book that tells you the when's, how's and why's.
At 18 months there was a transition and by 23 months a regression of skills that confused even the doctors. Early intervention and diet changes were recommended and with that the journey of recovery began. I read so many books, spoke to countless professionals and parents that the next steps were like driving cross country but without Mapquest. Fear was the navigator.
1 and 54 children are diagnosed with ASD... There are no causes or cures. The recommended treatments are not one size fits mosts, its individualized.
When my son was diagnosed in 2005, the recommended services were
ABA- applied behavior analysis
Special education- IEPs
Special diets (gluten casein free)
The biggest issues faced and continue to face
chronic sleep disturbances
verbal and body stems
Darting away from safety
Finding sitters and people to help
Parental mental health- compassion fatigue and burnout
Overwhelming negative impact on relationships
Lack of support from the most unexpected places and people
For years no one in my house smiled. We were hurt, scared and unsure how to navigate our future. It was difficult enough just making it through the day, so happiness did not seem high on the needs list, it truly was about survival. I spent my days reading and researching new protocols focused on recovery and was fortunate enough to travel to meet Trail Blazers with advanced knowledge for treatment. Each new journey gave us hope and each new journey led to disappointment and guilt.
The autism roller coaster was making us all sick.
I sought counseling which ended in more frustration because the counselors were not familiar with autism and the impact on daily living. The experience left me feeling more isolated. Spending time with family and friends were the least desirable activities in the early years. Listening to stories about neurotypical struggles usually left me in tears. I focused more on the differences and the struggles and totally missed the moments when I was surrounded by the kindness of others. (Its only recently that I recognize those sweet souls who were there with me in the early years).
When I let go of the unrealistic expectations I had for my son, a positive shift occurred.
I can't lie, I felt deep shame and guilt when we shifted from recovery to family survival. I
couldn't do it anymore, we were all miserable. I lost sight of the fact that love was the reason for everything. Love.
And when I returned to school to finish my masters degree in counselor education, another positive shift occurred, a deeper understanding about how my mental health impacted the very soul I was obsessed with helping.
We have had lots of bumps and bruises along the way, I work hard to quiet the voice that tells me that I should be working to change him instead I spend time highlighting his awesomeness. Isn't that what social media is great for, right?!? My guy is really cool and keeps us laughing with his sneakiness.
Today, I take the journey through autism day by day. I work hard to honor the smiles I see on my son's face.
My son has taught me more about life than any Disney movie. He is the beauty and I am his beast. He loves me despite my outward struggle. I absolutely believe that my son is changing the lives of others, through his beauty despite the obstacles that stand in his way. After all, he is responsible for changing this beast.
Side note-when they find a cure for autism, I want to be first in line, not to change him but just to hear his voice call my name.