- Parents are too undisciplined and create mirror image children...
- Parents are too ignorant to provide an acceptable level of accountability or training for their children.
Innocently, my friend who successfully raised wonderful neuro-typical children posted a picture on Facebook of a wide leather belt with the words emblazoned across the photo, "The original ADHD medicine". The obvious implication is that good ole discipline will "cure" all that ails the ADHD child. The joke hit me as being about as funny as racist humor. It just isn't. Period. Ever.
We know what it feels like to be “that” family.
For families who are raising children with authentic neuro-psychiatric differences, judgment is cast upon both the child and parents ad nauseam. The children are "misbehaving brats" and the assumption is that either:
Families raising children with hidden disabilities deal with the added challenges of child rearing AND the unrighteous judgments made against them. Judgment isolates families and undermines every ounce of support a typical family may enjoy facing normal parenting hardships. The net result is that families who actually need the most understanding and support, actually receive the least.
For the countless re-posters of the Internet meme, don't think for a minute that such "humor" made at the expense of struggling families is throwing Big Pharma under the bus. Big Pharma is not listening. But someone is listening. All the families who are in your sphere who are dealing with neurology issues in their own homes are listening. And your message produces bad fruit.
For the parent who is still ignorant of the reality of neurology’s impact on behavior and self control in their children, judgment may compel them to exert even more ineffectual pressure on their misbehaving child in the form of harsher and hasher discipline culminating in abuse. Discipline will never cure neurology.
For the parent who is aware that the challenges they face are resultant from a hidden disability, judgment through insensitive jesting may hurt and isolate them further.
I fail to see the humor in either of these outcomes.
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.
Drawing Battle Lines
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.
MD Does Not Spell GOD
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.
To Speak or Not to Speak
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.
Take This Child!
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 Don't Get No Respect!"
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.
The Value of a Label
Brain chemistry challenges are hidden disabilities. With a label, your child will be judged more fairly by your family, and by your child's overseers. Those labels give you search terms to find a community of prevailing parents and a wealth of enlightening information to aid you. Even more importantly, however, labels open the door to accommodations and services for your child.
My daughter is brilliant. Those three hours of homework I spent every night during her elementary years working through screaming rage attacks to get her to jump through the same hoops as her peers was completely unnecessary and relationship damaging. She laughed in Kindergarten relating how her classmates were learning "A: ahh" when she was speed reading Shel Silverstein comprehending the sophisticated humor of placing a brassiere on a camel. But Kindergarten was hard... it required complex tasks like standing in line and interacting with others. We actually had this conversation.
I became empowered when I figured out I had the right to mold expectations and requirements for my daughter in her school setting through 504 behavioral plans and IEPs. Without the labeling of diagnosis, your hands are tied.
Head in the Sand
With your head in the sand, you are unable to open your mouth and speak life to your child.
My son attended Sunday School at our mega church and made a delightful new friend. The boy was homeschooled, disturbing no one with his obvious tics. I took this child to Chuckie Cheese's and observed his struggle to transition between tasks, distractibility, hyperactivity, and obsessiveness. I tested the waters by casually mentioning that his playmate, my son, had Tourette's Syndrome and that's why he had certain unusual (aka identical) behaviors; think nothing of it. No lights went on, so I decided it just might be time to have a careful chat with his mom. I'm no doctor, and I don't diagnose, but certain symptoms are profoundly evident to the experienced eye. Response? Very little...
The message I couldn't speak to her son: "I see the shame on your face when you turn away to try to hide your tics. You need to understand that you're not crazy. I know you are not doing those things because you want to. There is a spot in your brain that sends errant signals. No big deal. It's just chemistry. That's all it is. It's why you struggle to transition from one task to another, why you perseverate, why you lose the battle to sit still even though you try so hard. If it bothers you so much that we need to explore treatments, just let me know. In the meantime, I want you to know that I understand how hard it is for you, and I am giving you full credit for efforts as well as for your successes. I see your heart, even though in other settings you may endure harsh corrections, know that I am on your side."
Wake Up Call
My alarm this morning was a phone call from a suicidal boy our son's age.
He and his mother were trying to decide if he should be admitted to our local psychiatric hospital. There are two reasons for admittance. 1) You are a risk to others. You might actually hurt someone. 2) You are a risk to yourself. You might actually hurt yourself. That's it. Anything else and the ER will send you right back home. Those are the magic words that = admittance. Bear in mind, however, that there is a difference between wanting to die and making plans having obtained what one needs to implement that plan.
What will they do for you there? That depends somewhat on the quality of the institution. First of all, they will remove all strings and sharp objects from your possession. Then they will keep you under constant surveillance until no longer deemed a risk which typically happens through stabilization resultant from med changes. Lastly, hopefully, they may have counselors there to help you deal.
So what's the down side? Those hospitalized with you may have come from families very different than yours, scary different. Mom and Dad can only come during visitation hours, very dissimilar from when you had tonsils or an appendix out. You can't leave until the doctor says so, days to weeks from now even if you change your mind.
Even so, you'll live to tell about it.
Two of our three children have Tourette's Syndrome as well as a few other co-morbidities, inherited neuropsychiatric disorders. I'm still happily married, love life and want to share encouragement bringing hope, humor and insight into the process of raising children who are different.