​I addressed a group of mothers raising children with autism in Havana, Cuba this week. I offered the love of God, and some basic affirming truths taken from Scripture. I shared that even when medical questions are answered, we may still have spiritual questions.

One woman had tears streaming down her face as I spoke. 

A man who doesn't know God approached me afterwards, hungry for more. 

There is a bond between parents who have faced similar challenges. We understand each other's pain. Isolation alienates, and robs us of hope. The reassurance of "Me too!" is a universal experience that bridges between cultures. 

And Kingdom culture dictates that we do everything in our power, even travel to far reaches, to offer the comfort of our shared stories and the Light of the Savior of the world. 

Go bridge some gaps in your world. Your experiences, failures and triumphs, put you in good company with others who are also committed to overcoming. Hearing from you makes their journey a little less difficult through connections that bring hope. 

Somehow we maintain hope that putting our child with hidden disabilities in school equates to getting a break. In our exhaustion, we look forward to late August/early September while at the same time grieving the inequities and social rejections we anticipate await our child there. The illusion of a break doesn’t last long. I think my daughter’s school had my cell phone number on speed dial! 

One semester my daughter started a new science class, and I braced myself for the barrage of calls as she had never taken a class from this instructor previously. After a week of silence, I was convinced my daughter was hiding out in the bathroom! Finally, I dropped into the classroom after school to chat, and her teacher had plenty to say. My daughter was brilliant, engaged, and quite knowledgeable, a delight. “Of course, sometimes she...” I discovered this teacher’s son was also on the spectrum. She could see my daughter for her wonderful self, while handling beautifully her troubling behaviors.  

Of course, more often the calls increased in frequency like a speed train barreling towards a hairpin turn ahead on the tracks as the fall progressed. The illusion of a “break” vanished like vapor, as I found myself rescuing, advocating, trying to figure out “what really happened”, and holding my child accountable for both behaviors and expectations placed upon her. A helpful strategy during Autumn was to change my own expectations of what a break looked like. 

There is more than one way to take a break. When I’m preparing my yard to endure the prolonged Colorado winter, raking leaves and clearing raised beds, my muscles tire. I don’t sit to rest, rather, I switch jobs employing a different muscle group. Raking turns to sitting and weeding, or bagging. The variety allows me to continue progressing towards my goal, giving parts of my body a rest while using other parts, all the while continuing to work. 

Perhaps you had hoped starting the school year would provide some relief from the endless battles. In a way, it has, because you get to use a different skill set now than when your child was home all summer, interacting with siblings, and avoiding chores like the plague. Presently you are listening, negotiating, brainstorming for success, dreaming up clever ways to enforce accountability, and advocating. The weight of the imponderables is being spread across a greater audience, which lessons the likelihood of any given collaborator collapsing.

Recognizing the reality that your child is still challenged in this different environment and requires your near constant “re-thinking” of strategies to address those challenges can shift the blunt force of the brutal calls you receive from school into a forward thrust that ensures progress. 

Over time, you will indeed see the headway that allows your baby to weather the winter in time.

I was startled by my daughter’s comment. I reflected on the parents I have met raising children with Down’s syndrome. Not once has the word “selfish” ever occurred to me in describing those parents. But I also can only remember those parents telling me excitedly about milestones their child had achieved, or difficulties their child was facing. Perhaps these parents were “me focused” when they started their journeys, but now, their devotion and commitment were enviable character traits that causes casual onlookers like myself to drop to our knees admitting we are not worthy in comparison.

Out of curiosity, I had my 23 year old daughter with hidden disabilities read the post and share with me her insights. “I think this mother is selfish,” was my daughter’s first observation. “She thinks raising this child is about her, but it isn’t.” I saw pain in her expression.

At first, navigating the unrighteous judgments leveled against us as parents raising children with hidden disabilities (including accusations of selfishness) can knock us off balance. We are still fighting our own internal vows about child raising, what medicinal intervention, nutrition and accountability will look like in our homes. Our own blame-based behavior models may still be intact, not fully grasping the impact neurology has upon our challenging child. But once we topple those idols in our minds, we enter the maturation fast lane. It’s no longer about us, our ideals, or the impression our parenting (or even our advocacy efforts) make on another. 

Our focus shifts to our child whose struggles may impact them for a lifetime.

• What language choices empower my child the best? 
• How can I shield my child from unrighteous judgements? 
• How can we, as parents, use our own transparency, honestly and vulnerability to both protect and advocate for our child? 
• How can we obtain the best interventions in spite of our limitations? 
  

The day will come when our children grow up and read everything we wrote about how difficult it was to raise them. They already fight self loathing and feelings of worthlessness; after all, according to the other voices in their lives, they do not measure up.

I believe her intent was to offer empathy to other struggling parents who are indeed impacted by raising children who present profound challenges to entire families who struggle to cope with the demands. The fact that in her own need, she is willing to invest in the lives of other parents tells me she is focused on others, in addition to her children, and not on herself.

But additionally, I will take my daughter’s comment to heart, remembering that I am here to teach my children that they are worth every ounce of effort expended on their behalves. It’s not about me, no matter how much raising my children with hidden disabilities impacts me. 

A safe gathering place of friends who understand

I serve a God who heals. Some of my friends are the kind of people who travel internationally to proclaim God's word and experience first hand miraculous signs and wonders, dramatic healings that defy science and glorify God. I know God heals, yet my child who has now reached adulthood is still at home, struggling with anxiety and depression to the point of being disabled in some seasons. Yet she is a delight to my heart, and a huge help to me at home. We press in for healing, utilizing medical intervention as well as prayer, but in the meantime we trust God is good, all the time. He walks us through the valley of the shadow of death, not around it. 

We miss the passage in Hebrews about the heroes of faith that says some women received their loved ones back, while others were sawed in two! Granted, the context of the passage refers to persecution for faith, but the truth can be generalized. Those families cried out for deliverance too, just like me. There are those crying out to God for an outcome as good as mine. There are those crying out to God for an outcome as good as yours. Perspective is everything. In the midst of our most drama filled years, I would call my friend who adopted a sibling group of four with their propensities toward addictions, counseling needs and brain chemistry challenges. I used to tell her I called her to gain perspective, but that she needed to call a Thai tsunami victim to do the same! No matter what our battle, He is there to walk each of us through. One thing I know, neither life nor death, rage attacks, humiliations, incarcerations, surgeries, or school expulsions can separate us from the love of God.

Psalm 23:4, Hebrews 11:35-40, Romans 8:38-39

Toppling the Idol of Ideal
Raising Children with Special Needs

The stats are changing. It’s no longer just the rare family who has the autistic child we read about in some magazine article or see on television. Behavioral issues in our children have catapulted out of the realm of child raising and psychology and into the realm of neurobiology and psychiatry. Whether resultant from neurotoxins in the environment, dietary criminals or some other etiology, more and more families are receiving diagnoses of ADHD, autism, or other legitimate neuro-psychiatric disorders.

Is the church late in constructive response? We may be unintentionally too quick to offer counseling or deliverance with no real grasp that neurology is not necessarily a spiritual problem and definitely not a parenting problem; it’s brain chemistry. This leaves Christian Moms and Dads potentially susceptible to the myriad of uninformed voices, voices that decry the pharmaceutical industry as evil drug pushers for profit, and voices blaming lack of quality parenting for most if not all behavioral challenges. 

It’s not sympathy that’s needed, but rather hearing from somebody who “gets it”, somebody who can discuss practical issues like fighting despair, judgment, and educational challenges, deciding about medications, labeling our children, IEP’s and 504 behavior plans. Perhaps most importantly, what is needed is not only assurance that our children will be alright, but that we will survive intact spiritually while grappling with why me, why us, and why my baby? If you are that parent, You will enter into a new season, a season of discovery that launches you from a battle-weary position dodging the fiery darts of the enemy, to a position of protection reclining in the strong tower of God’s abiding presence. 

When my son was in the first grade, his classmates were mostly accepting and his teacher understanding. Yet my son’s vocal and motor tics caused him to find ways to compensate. What does even a young adult do to compensate when accidentally making an aberrant noise in a room full of peers? Some blush, some wish they could go hide in a hole, while others make light by offering a joke about barking spiders or feigning their neighbor’s guilt. I think one has to be at least thirty before possessing the poise and grace to just say “Excuse me” without a second thought! And that’s for just one infraction, not infractions that happen repeatedly, every single day of their lives. 

My son’s school psychologist came to observe in the classroom and witnessed clowning behaviors. The psychologist’s assessment included the judgment that my son was an attention seeker. Really? Exactly the opposite was the truth. Comic behaviors in the midst of tics are to conceal the tics, because the more controlled gross and fine motor movements become for an aging child, the more obvious unwanted movements become. And what’s worse, sometimes the tics themselves can be humiliating. For a painfully prolonged several weeks, my son had a complex motor tic slamming his fist into his groin in a knock out punch. He neither enjoyed this or thought it was funny. He was mortified, humiliated and in pain. He could blush, go hide in a hole, or make light of it, all the while dying a thousand deaths as a school psychologist further assassinates intentions labeling my son as attention seeking. 

These mischaracterizations tempt us as parents to go Mama Bear on our children’s overseers. A level head with aim for advocacy is wiser. I pretend that we are all on the same team, and all believe in my son as much as I do. Visualization is a powerful tool. Loyalties are created through offering grace when communicating how observers are getting it all wrong, terribly wrong, by using face saving heedfulness. There are times this takes as much self discipline as we used when our obstetrician told us “Don’t push!” and we wanted HIM to die a thousand deaths. This is our battle to fight, and when battle lines are drawn, the more warriors you retain on your side of the chalk line, the better. 

First pediatrician: Our pediatrician fancied himself capable of diagnosing and treating brain chemistry. He prescribed my preschooler Adderall for ADHD symptoms. On this medication, she body slammed a plate glass window in a fit of rage because she could not choose between two pencils in a cavern gift shop. We were accustomed to her rages, but there was something characteristically different as she sustained a five hour tantrum (much to the amusement of the guards) on the floor of the Air and Space Museum in Washington DC. My call to her doctor yielded instructions to double her medication. I fired him instead. He later abandoned his wife, children and medical practice, running off with a Russian pen pal.  

At a loss and completely ignorant, my husband and I began to devour literature on ADHD. Our wonderfully brilliant child could barely function! When tested for Kindergarten readiness, I was told my precious baby, already reading fluently and casually doing division in her head, cried, disengaged, and curled up in a ball “acting autistic”. Rather than gaining admittance into the private school of our choice, my daughter received a psychiatric referral! Without a clean bill of health, our child was unwelcome.

First psychologist: He was Jewish, which was funny considering what happened next: my child chose to draw for him the Christian plan of salvation with satan basking in the burning flames of hell, complete with the cross of Christ bridging the gap between earth and God’s throne in heaven, illustrating the substitutionary redemptive death of the Messiah. He asked us how long we had been sexually molesting her. (????) That wasn’t a very positive first visit. We were not devastated; we were rightly outraged. He did not bother to get to know us to determine our character. Instead, he determined that the structure we put in place after reading on ADHD was actually the causative agent for our daughter’s maladies. She received the coveted “clean bill of health”. Life proved differently.

I am happy to report that after these misadventures, we actually received valuable help. My point however, is this: TRUST YOUR INSTINCTS. Get educated, eyeing preconceived ideas, even your own, with suspicion. Use health professionals to augment what you are learning, to partner with you as you discover what is best for your own children. Reject what doesn’t fit. Nobody loves or knows your baby like you do. 

No matter how much you have observed, you can not diagnose another. 

But you certainly can spot symptoms from a mile away once sensitized through exposure to those close to you with similar maladies. In the beginning, I couldn’t see my own child’s tics. Now I spot anyone’s tics from a mile away. Autistic idiosyncrasies are not always apparent to the untrained eye. Yet those who recognize the patterns suspect almost immediately. Manic symptoms follow a predictable trajectory, as do many mental health clues.  

Recently I counseled with a friend about bipolar symptoms, and what to do as an observer of another family’s challenges. As a woman my own age with various life experiences, she gets it. Here’s the risk you, my friend, or I face. We might offend someone if we indicate to them there may be a mental health issue and not just behavioral oddities. But here is the greater risk. Most people have no clue about mental health issues.  With no clue, there is no seeking of treatment. When one of mine was still little, there were classic symptoms that should have YELLED obsessive compulsive disorder to me, to teachers, and to health professionals. Collective ignorance created a gap of three years before diagnosis and intervention. 

Speak out what you see, sensitively and non judgmentally. If you have already made relational deposits in the bank of another, your instincts should be trusted. The counsel should never include a diagnosis, even if that diagnosis is obvious to you. Unless you are a licensed psychiatrist reading this blog, you can not, may not and should not diagnose another person with a mental illness. But tipping them off to get evaluated by a mental health professional just may save a life. 

The church has bought into a lie. It’s a distinctly Western lie, one that’s intricately intwined into our benefits based Christian faith. We protest loudly when we suffer the harsh realities of life, realities like our own mortality, or the mortality of those we love, or flesh based laws of inheritance, or we become victims of an unjust and corrupt system. Our pleas before our living God can become like fetishes we rub for favor, with no real submission to the God we claim to serve.

What is our response when our child is born with differences that reflect poorly on us, our genetics, or our parenting? It’s one thing to adopt a child with brain chemistry or developmental problems, but it is quite another to physically birth one, or even several. What is our response beyond the horrific dark abyss of grief when we lose a child? What did we actually mean when we surrendered our child to God in the first place? What we meant was never surrender, but actually protection unto perfection. Anything less is perceived as a breach of promise, and a crisis of faith ensues.  

On a flight this week, I sat next to a Chinese college student with Christian heritage. She marveled that her grandfather was a believer throughout the Revolution, wondering why he did not lose his faith. I suspect that during that season was when a truer faith was born, a mature faith with abandoned need to control, a faith that lacked the demand for an explanation. The result of fire in our lives is solely dependent upon our own constitution, not the source of that fire as being from heaven or hell.  The same fire that consumes stubble, purifies gold. 

I respect the fortitude of a widowed 90 year old man who, as a result of his moral convictions, choses sexual inactivity. However, if I met a young man in his twenties who managed to keep himself pure based entirely on his decency, I would be far more impressed.  Why? The young man's self control is more of a challenge. 

There are those with brain chemistry challenges who manage to hold their lives together. Are they getting the extra respect that should be afforded them? If someone were to say to you, "I'm bipolar" or "I suffer from chronic depression" and their lives are not in chaos, would you only hear their diagnosis, or would you actually be impressed by the strength of their character?  

Our children with differences may actually be trying multiple times harder than their peers or siblings, only to be subjected to repetitive corrections for not quite reaching the set level of expectation. They watch others who may expend very little effort receive accolades. They cry FOUL with attitude in the midst of their demoralization. Like the Na'vi line from Avatar, we must "see" our children. Respect the effort and progress, not just the standard when doling out praise.