By Sarah Casburn, RECE, RHN/RNCP,
Founder of Crown Family Wellness
Why, God? Why does it have to be THIS hard?
And when will it get better? Why aren’t things improving for our precious daughter, despite all our prayers and tireless efforts? Can our marriage survive this? Will we have the mental and physical strength to endure this? What will become of her after we are gone, will she be safe and independent?
My husband and I were overcome with these and countless more questions, drowning in complete hopelessness and exhaustion. We had endured six long years of medical and behavioural challenges with one of our children, since she was born.
First, she was deemed “failure to thrive” due to feeding issues requiring a nursing tube, endless crying, and sleep challenges. Over time the situation evolved into severe separation anxiety, significant coordination issues leading to difficulty with mobility, in turn incurring many, many falls and head bumps in the first 18 months.
From 8 to 34 months old, we had called an ambulance three times, when she would appear as though she had died, going limp in our arms, blue lips, and non-responsive. Though her body would restore itself within half an hour or less each time and her medical tests came back inconclusive, it took the third hospital visit to determine she was having “breath-holding spells” that were linked to low-iron and anxiety. Thankfully, she grew out of those by elementary school.
Next came speech delays, a diagnosed sleep disorder, eloping in public places, extreme lack of emotional regulation, social interaction challenges, and significant rigidity around eating. By the time that daily aggression towards family members and pets was a common occurrence, we were regularly isolating ourselves from church attendance. Special events or family gatherings would require taking two vehicles so half the family could stay when the inevitable escalations happened a short time after arriving.
Trust me, by this time we had sought out many professionals to help. How many doctors does it take to reveal the truth? About five too many, in our case!
“It’s a parenting issue” said one of three pediatricians straight to my face, who required my husband and I to attend his private version of parent training after hours one night in his office. Though we endured his ineffective and condescending lecture out of desperation, he was at a loss to explain why she would unbuckle her 5-point car seat harness at 3-years-old with brute hulk strength, attempting to escape the vehicle while we were driving over 60 mph on the freeway or why she would instead take off her snow boot and smash her sibling in the face for no apparent reason sitting beside her, trapped like a sardine.
By her fourth birthday, our last pediatrician strongly offered antipsychotic medication as she felt our daughter was headed for “Conduct Disorder” and would end up in dire circumstances without this type of treatment.
An array of medical opinions and diagnoses were being handed out to us like they were charms to a medical bracelet that included anxiety, Oppositional Defiant Disorder, and ADHD. One developmental pediatrician warned us not to pursue a “label”, that she was just a difficult personality with high intelligence and would outgrow it by age 8 or 9. “Be patient”, we would often hear.”.
I knew deep down in my momma heart that we had not yet heard the truth and I was laser focused on uncovering the missing link like it was my purpose in life.
“It sounds like autism” said the child psychologist we finally hired out of pocket, in our initial intake appointment after hearing our family’s tale of woe.
I’m sorry… it’s WHAT?
You see, this concept was so incredibly shocking to me that you could have pushed me over with a feather. Not in so much that I disagreed, but because I felt I “should have known”. Why?
You see, before having children, I had a career as an Early Childhood Educator working in daycares (even having my own home-based one at some point) and had continued my post-grad studies in Autism & Behavioural Science. That led me to working as an autism therapist (these days referred to as a Registered Behavior Technician) for a Children’s Hospital in their clinical Intensive Behavioral Intervention program using ABA (Applied Behavior Analysis).
Ok, so, yes, I did see a few cues early on such as a speech and social skill delay, plus she would occasionally line up her toys, lacking much imaginative play. I would mention to family here and there my concerns, but I was dismissed as projecting my professional bias onto her and she would be “fine”.
It’s important to note that at the time of my autism training, it was much, much less common, especially in girls. I came to learn some time later that it’s mostly because the research is based on young boys, so a female presentation was not studied, identified, or taught.
Our child psychologist proceeded to encourage me to research autism in girls. I was blown away. Yes! This is exactly the missing link I had prayed to discover!
It was both a relief to have the answer I was seeking and instant heartbreak because I assumed the road ahead was a life sentence of dependence and hardship, without hopeful outcomes.
WOW was I wrong!
Of course, the formal diagnosis came with the expected recommendation of ABA therapy as soon as possible. I even received a compassionate warning from the psychologist to beware not to take it on myself, knowing my professional background and the long waitlist for service. He could plainly see that I was already burned out and could not take that on without great cost to myself, nor should ABA be implemented as a one-person endeavor.
We were able to secure private ABA autism therapy services locally after a time, and I disregarded the previous advice of our psychologist. It seemed to me that he simply didn’t understand that God had placed me on this path professionally all those years ago not for a career, but for this very moment, to help my own child! How could I reject God’s gift? The company agreed to allow me to be the hands-on therapist at home and collaborate with their supervising BCBA virtually to review my program design and data collection.
Despite my best efforts, the prophecy was fulfilled, and I knew it was time to concede to an outside therapist to regain my strength and mental health. After a season of surrender to my fully capable and caring peers in the field, it became clear that this approach was not working, and it began to take its toll on my daughter.
I waived the white flag and threw in the “gold standard” towel of ABA therapy. Why didn’t it work? What are we supposed to do now?
Then we tried various other approaches, including regional crisis intervention TWICE, which also fell short and left us feeling defeated.
Just when I thought we had come to the end of the road for options, and despair loomed over us, God’s perfect timing brought us a ray of hope. Within that same month, I was contacted by a friend sharing with us an opportunity to participate in a neuroscience program called Sensory Enrichment that was evidence-based and clinically validated for autism. The promise was that short sensory-based activities would stimulate my daughter’s brain to grow new connections and boost development in many areas including mood, behaviour, emotional regulation, communication, attention, sleep, eating, sensory, social and more, reducing the challenges we were facing.
We were told that changes would be seen in the first month, and likely in the first two weeks! Plus, it had a 30-day guarantee. That was unheard of! All the other therapies and approaches were a gamble with our finances, and without return on investment!
It sounded too good to be true.
Deciding to engage the online program was helped by the fact that it was caregiver-led at home, so it was convenient on my terms. Instead of taking up hours in our schedule like ABA did for us, it only took five minutes per day, with the option to extend or shorten that time as needed with the flow of life. It didn’t involve any fancy equipment, just household items, and we would be assigned to a certified coach who would support us weekly remotely for customization, provide encouragement, and celebrate our WOW moments, which would be many!
While I was full of doubt that anything would help us, it was an offer that I couldn’t refuse. With my mustard seed of faith, I jumped in with both feet for one last kick at the can.
Friends… something incredible happened!
In two short weeks of starting the program, our daughter’s 45 minutes violent meltdowns completely vanished! We were stunned and in complete disbelief that anything short of medicating her would accomplish such a feat.
One day, further into the program, when I asked her what she wanted for lunch, hoping to avoid the usual power struggle of food, she calmly said, “Whatever you want me to have, Momma!”.
My. Jaw. Dropped.
Her iron-clad preferences were transformed into adventurous eating and tolerance to difficult situations.
We could go outside, or shopping and she would stay with us.
Family events and church became manageable.
She would put herself in a time out in her room to calm down without anyone’s intervention!
I could go on and on about the changes we saw in her and am so very thankful for this program and that we were able to finally rise above the crisis that had held us all captive for so many years. My beautiful daughter was doing better, because she felt better. We didn’t know at the time that serotonin and dopamine is typically low in autism and these simple but powerful activities inherently increase those and other neurotransmitter production. Not only does it boost while you do the short sessions, but the research shows that levels can stay elevated for over an hour!
After only a couple of months with the program, I discovered that my professional credentials qualified me to become a certified provider of the therapy. I immediately knew that there was a call on my life to take our story to the next level by working directly with other families to bring them the hope and change they needed.
I have partnered with many families since then and I cannot put into words the depth of emotions that rise when I think of their stories and transformations. I’ve even expanded into Children's Ministry!
Are you or someone that you know in a similar situation, praying for an answer? It would be my joy to walk with you on the next season of your journey.
Note from Dr. Holmes:Stay Tuned to the Podcast, Sarah will be a guest twice!
Find out more about her on the Referrals tab for Crown Family Wellness Contact Information!
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