​Okay, let’s back up a little bit. What is self-diagnosis?

​There’s several ways to go about doing it. Some are good, some are bad, some are downright unhealthy. I’m sure we’ve all at least heard of the experience of going to Web MD and diagnosing ourselves with pneumonia, Ebola, and six forms of cancer. But the correct method of self-diagnosis is a balanced process of self-examination, self-identification, and applying a label that while sticky, is not necessarily 100% accurate. 

“But Carly,” you might say. “Why not just go to a doctor and find out for sure what’s wrong with you there?”

​There’s a variety of reasons for this, ranging from unsupportive family situations to lack of financial resources. But the number one reason is simply this:

• When did you or anyone you know last go to a mental healthcare professional for a checkup?
  
• When does anyone see a mental healthcare professional if they or someone else hasn’t diagnosed them even with just the idea that “something is wrong?”

Self-diagnosis is a vital intermediate step in getting treated for mental health issues, because nobody treats their mental health unless they already think something about it isn’t right. 

​This unfortunately is not as easy as it sounds, especially not for children and teenagers. Being a teenager is hard. People assume you’re already volatile and emotional. They assume that you’re attention seeking. And they assume that you are wrong, that the older you are the wiser you get, automatically. In some instances all these things can prove true.

​Any of you that can remember being or have raised a teen will know that. But at the same time, these factors make it exceedingly hard to be taken seriously when you need help. “I have depression,” or “I have an anxiety disorder” are things that are easy to brush off when spoken from the undiagnosed mouth of a child. 

What makes it extra difficult is that even if the teen does manage to get someone to take them to a doctor - naturally it’s not as though they can take themselves - they are often not taken seriously there either. I have been diagnosed professionally since I was seven years old, and even as a grown woman I still encounter mental health professionals who assume they know more about my diagnoses than I do.

​I’ve been asked point-blank to my face, with my file in the man’s lap, “Why do you THINK you have Tourette’s syndrome?” I did not keep the doctor for very long. How much more difficult is this for a child who hasn’t been seriously listened to by anyone along the way? 

​When I was in third grade, I remember coming to my mother and telling her that I couldn’t see the board at the front of the class. As it turns out, I needed glasses.

I looked at myself and said “this is wrong,” and my mother listened.

At no point did the process devolve into:

• shame (”why are you doing this”)
• accusations (”you just want attention”)
• belittling (”you don’t even know what you’re talking about”). 

​I went to the people in my life who were supposed to help me, and they did, without question. It was self-diagnosis in third grade.

​I hope one day help for mental illnesses can be as respected and as easily acquired. ​

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

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. 

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. 

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. 

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.

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."

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. 

I’ve been there. I was convinced that my daughter needed to be home-schooled. She struggled with extreme volatility, excessive obsessive behaviors, sensory issues and incontinence as well as lacking the emotional maturity of her peers by several years. Additionally, although only in the second grade, she was already decoding words on an eleventh grade level cracking jokes with the sophistication of a young adult. She was horribly vulnerable, completely oblivious to the impact her behaviors had on others. She internalized the messages from the scowling faces not in light of her rages, but instead as a reflection of her own lack of worth or like-ability. I knew this, and hated myself for failing. I was about to mainstream her in our neighborhood school. 

What does failure look like for a Type A mother?  Anything that falls short of “the ideal”. The ideal was home-schooling. I had already home-schooled her for half of kindergarten, all of first grade, and now half of second. Meanwhile, I had a new baby, lived in a new town with next to no friends, and could not attend church functions or social events to create them. After all, who can babysit a newborn and a screaming volatile child at the same time? 

I made the right choice. I put her in school. I didn’t do it for her. I did it for my mental health. I did it for my other daughter with whom I continued to homeschool and build relationship for the next 5 years. I did it for my son. I did it for my husband. And it was the hardest thing I had ever done because it wasn’t what was best for her and I loved her just as desperately as I loved all the others. But it was right, and the Idol of Ideal came crashing down.