In early 2016, I wrote an article about our journey of Faith, regarding having children, titled AFTER 5 YEARS, WE’RE PREGNANT, AND THERE’S A STORY TO THAT. That post still draws readers every once in a while, and so, this post is an update after 4 years have passed; although it is probably not what one might expect.
Our son was born in late September of that year and without complications. We were thrilled! He hit and surpassed of all of the first year developmental milestones, including above average weight and height, crawling at about 5-6 months, attempting first words at about 9-10 months, steps at 11-12 months. But last November (2019), our child was diagnosed at age 3 with ASD (autism spectrum disorder).
Autism statistics from the [CDC] released in April 2018 identify around 1 in 59 American children as on the autism spectrum – a more than ten-fold increase in prevalence in 40 years (Autism Speaks, 2019).
Accordingly, I calculate almost 1.7% of American children and their families face the challenges of ASD. If (and only if) the trend of a ten-fold increase over 40 years continues, then by 2060, 17% of America’s children would be diagnosed with ASD.
Between about 15 months old & age 3, we noticed idiosyncratic behaviors in our child, but it was not until we obtained a diagnosis that we officially felt the infamous emotional mix of relief and weight. Relief came in the form of having an objective diagnosis—a name to call it & knowing therapies were available. We were able to look back and see very slight indicators from birth, like wrist rolling, very seldom crying, difficult / slow bowel, not smiling and laughing readily as an infant, not recognizing / responding to being called by name as a young toddler; and then, language & expression regression, dissociative / social isolation behavior, sensory fixations and tics, scripting, unexplainable & inconsolable meltdowns, little to no reaction to injury, and seeming inability to potty train. The emotional & psychological weight came, when we realized “this” was not temporary; it was our “new normal” for life, and the little boy we watched develop in mostly neurotypical ways from day 1 to about 16 months old is—in all recognizable ways—gone. It’s almost like a death of sorts.
These challenges beg spiritual questions, like ‘why would God answer our years-long prayer for a child by giving us one that seemed perfectly “normal,” but then regressively spiraled into ever increasing evidences of a lifelong condition?’ The fundamentalist Christianity, in which I was raised, might try to tell me the horrid lies I overheard them tell others. For example, “this is because you were not / are not walking with God.” Not only is that nonsense & pure evil, but Jesus denounced it, when he addressed those who witnessed Jesus healing the man, who was born blind. Fundamentalists are worse than Job’s friends!
Some might encourage me to pray for yet another miracle of healing. While that isn’t an altogether wrong idea; and while I do believe God can work miracles, I also believe that miracle seeking can be a dangerous road, especially if someone is trying to get out of or alter the supposed miraculous situation, which God handed them as a result of prayer. To be plain, we prayed for a child… for years! After God gave a child, will we now pray for God to remove or alter the condition of what God gave? Is that how Christians live out “thy kingdom come; thy will be done?” No, that kind of “holy escapism” is altogether perverse. The answer is to love what God gives, and we love our child.
When I think on the child God has granted us, no matter how neurologically non-typical that life may be, I recognize that I am still on a journey of Faith—one that focuses more outward than inward, more on others rather than on my “self.”
There has been a period of months [perhaps it is still ongoing], when I registered the death of dreams I had for me and my son & for us as a family. I had to realize they were only dreams, not reality. Sure, it hurts when I ask myself, ‘will my child ever say “I love you, dad”? Or will I be changing his diapers well into adulthood? Or, will he become independent, self-realized and self-actualized? How will he function in society & will society treat him with understanding and care? The answer to all of those was (and still is), “I don’t know.” But, I have today with him.
At the same time, this parent of a child with ASD has become much more aware of other families with ASD children (proportionately higher rates in poorer & minority populated zip codes), and of “others” in general. Without my child being diagnosed with ASD, I might never have looked up the causes of autism or the statistics about who is affected most by autism. Being honest, autism, and those who battle its challenges, would have remained invisible to me without the path that God has put me on by gifting me with a child on “the spectrum.” I perhaps never would have learned that most researchers in the medical community attribute ASD to the compounding effects of pollution (predominantly chemicals & air pollution) and other environment factors that have been wearing on our human genome, across the last 3-4 generations.
My child’s condition has not only made me aware of the plight of those of us, who cannot afford filtered or unpolluted air and water and (organic, pesticide free, hormone free, antibiotic safe, non-GMO, no MSG, no fructose / corn syrup, no preservative, low sugar) food, but also, how much damage the greed of the “industrialized” & “developed” world has done to our planet, its species and to our own human biology… and as always, the poor and oppressed always suffer for it first and most. I thank God for the theology I am learning from the poor of this world, who are rich in faith & counted by God to be inheritors of God’s kingdom. I have been given a wonderful gift!
The correct answer to the spiritual questions I pose above is “love”… not in word only but also in action. Someone recently asked the question “what is the best way to express ‘I love you,’ without using those 3 words.” A friend replied, “how can I help?” That is absolutely the best answer I have found. God is love, and love asks, “how can I help?”
Some adherents to the Christian Charismatic Movement will say things like “don’t rely on doctors and psychologists, you just have to have faith enough in the Lord,” implying that “enough faith” will earn merit with God for a miracle …and that medical sciences are “of the world.” This too is fanatical rubbish. Luke was a doctor and did not stop using the medicine of his day, after he began to follow Christ. Also, the Bible states we are to anoint the sick with oil, which is not just an indicator of “marking one for the Spirit’s work,” but was—in that ancient context—a way of administering medicines. When Jesus healed, sometimes the Bible’s word to describe the healing is the Greek word from which English derives “therapy.” God expects us to do what is medically possible to help others. Medical science is a gift from God.
Rather than praying for a miracle to make only my life “better,” I can BE the miracle. I can help my child adapt to a “neurotypical” life by getting him needed therapies. Even that is a challenge, due to insurance providers (like Anthem) cutting insurance coverage in 2019 for therapies necessary for children with autism. So, I ask, “how can I help,” and the answer is to petition elected officials for requiring better health coverage, preferably Medicare for All.
In Indiana, ABA techs (those who administer therapies to autistic children) are not required to be licensed… as in there is no mandatory certification to assure proper qualification & training. How can I help? I join others in contacting elected officials to ask them to pass legislation that requires certification and registration for all behavior technicians, before they “work with” my child.
If pollution and toxic environment factors are the root causes of ASD, then how can I help in the fight to stop pollution and those most affected by it? I join in with groups and movements that address these problems.
You see, I can be the miracle in my child’s life, not by focusing on how much of my dreams I may have lost or might lose but by asking how much can I love this child & others like this child by helping them have the most opportunity and advantage possible. I can love them.
When you meet someone with a disadvantage or disability, will you let them remain invisible, or will you (after listening and hearing) ask, “how can I help?” If you do ask it, then be prepared to listen more.