Parenting (muddling) through brain DISorders

Disorders have reigned supreme in my home for much of my motherhood. Disorders I couldn’t name, but KNEW deep down, they were wreaking havoc on our lives. Mental health disorders. Seizure disorders. In their mild forms, they are difficult obstacles to overcome. But in their more severe forms, they are the stuff of chaos – even life-destroying. In the midst of this frustration and fury that something yet unnamed has stolen all peace from my home, I would try to talk about it. But rather than finding an understanding ear, all too often I looked into incredulous stares and was given flippant reasons why the things tearing apart my family were perfectly normal. “All boys do this.” These well-meant placations undermined the truth, made me feel like a fraud. Or, better yet, I was told that I was the problem.

Case in point – health care professionals. As a young mother, I would describe the alarming behaviors in my two year old daughter: tantrums rising out of the blue at any time or any place with no perceivable cause. They lasted hours. I mean HOURS of a child screaming with trance like stares toward the ceiling, beating her thighs with her tiny fists until she made quarter-sized bruises all over them. I could do nothing to prevent these rages whether they occurred at a restaurant, a hotel room, our small apartment, the car, anywhere. I couldn’t do anything to stop them. Nothing. And I tried everything. The neurologist looked at me and told me that he had “never heard of such a thing in his life.” He dismissed me and humiliated me. I had nowhere to go from there… We spent 2 years in hellish fear that someone would accuse us of hurting her or causing this problem. One morning, at a farmer’s market, Layla had just enjoyed a chocolate doughnut and we were taking in the sights when she started up for no reason at all. A man followed us to our car and stood there as we tried to strap a flailing toddler into her carseat with our jaws clenched and seething. He called the police while staring at my license plate. I waited for 3 days for their knock on my door or for CPS to come take her from us. But it never happened.

And then the tantrums died down by the age of 4. Just like that.

I spent years and a small fortune seeking answers to help my children. To stabilize my home. At the age of eight, Layla fell under incredible stress at a new school. She was bullied daily, told that she could only be their friend if she paid them $5, or she was treated as though she didn’t exist at all, and the pressure and loneliness of it sent her into a tailspin. I saw alarming behaviors that were out of character for her.  And then one day,  after Layla re-enrolled in her old school, I got a call from her best friend’s mother. A call no mother wants to ever receive. While swinging on the playground, Layla had told her BFF about all her horrifying suicidal thoughts. Yes, children can have those. But when I cried out for help, I couldn’t find any mental health professionals with openings in my area except one nurse practitioner. She performed a battery of tests and interviews with Layla and myself, showed me the findings that Layla was struggling with depression and anxiety, but what my daughter needed, she said, was to “feel loved and valued” rather than medical intervention. Are you kidding me? Since I couldn’t get medical help, I put her in counseling for about a year. It did not stave off the psychosis that I now know she was going through. She lost hordes of friends because of bizarre behaviors that needed medicine, not love. She had plenty of that. And loads of affection and attention, too.

Before my children had their proper diagnoses, both children would lose control (for very different reasons of course) and would scream, cry and destroy anything in their paths. I had to sit on them or hold them tightly in an attempt to keep them from hurting themselves or each other. The pandemonium and fear left me completely drained. All this as I sat for years on waiting lists for specialists to make room in their schedules for us. After finally getting a new seizure disorder diagnosis, I was describing what was going on with another counselor to try to help Eddie learn to manage himself and all the trauma that comes with MRIs, EEGs, trips to the ER, the terrible things that adjusting to anti-seizure meds do to your child…the young woman, fresh out of college, told me there must be something I was doing to cause the problems.

My saving grace all this time was that the two kids rarely, if ever, overlapped in their worst of times – they simply traded off. No sooner than his seizures were under control a year and a half later, my daughter’s undiagnosed medical issues were flaring up again. I found myself sitting on an 11 year old to keep her from running out of our house in the freezing rain, late at night with only her socks and pajamas. Or from hurting herself as she would throw herself against walls. By some miracle I can’t explain, I finally found a psychiatrist taking new patients. (I have never been able to before or since in out community). But Layla had been suffering from severe depression for so long, she slipped into psychosis. And let me tell you, that is something you can’t ignore. In the midst of a psychotic break, it mirrors my sons seizures: she is not in there. The Layla I know is lost and I just hope to God that she will return.

It has taken 6 months of careful tweaking and praying, and sitting upon children disguised as wild animals, putting out fires, losing her friends, being humiliated by said friends in front of her peers, screaming, crying, debilitating depression, sleepless nights, endless appointments, purple bags under her eyes, slamming doors, unwanted drama of all kinds, but we have nearly hit that cautious cocktail of medications ushering relief into our lives. Most especially to her. And there are glimmers of hope that maybe this time, we will find peace in our home. A peace that has never been. But my hope is trepidatious. A fleeting, cracking thread. I want to have faith, but I find that I often must borrow the faith of those around me. I find it again through them.

Now I know, life really WAS that difficult –

I wasn’t crazy.

I wasn’t making it up.

It wasn’t my fault.

I discovered what it feels like to lose ALL hope. It is an ugly place to be and lingering there is not meant for the human soul. It is senseless and barren. But then one day, somehow that long lost friend, Hope, returns and carries you through. Some slight but palpable tickle lifts your chin again. Maybe, just maybe…

And then release finally cascades in ways you never anticipated. Diagnoses that would have devastated me a few years ago, shine a glimmer of something yet to be done, new roads to lead you to what is most needed. A painful but necessary quickening. I had to muddle through the chaos and DISorder to find help – and there is not a single stone left unturned. Armed with the resources needed to support my children in this tireless, but often beautiful thing called growing up, I find the load a little lighter. An easier yoke to bear. Maybe because we are all the stronger for it? Our circumstances haven’t changed, but my faith has deepened into a deep lapis, and I finally, FINALLY have help: a special education classroom, anti-seizure medications that work, a psychiatrist, and mental health medications that are nearly at a therapeutic level.

And that day, when she smiled again for the first time in months. A genuine, pain-shattering, happy smile. Hope.

Achieving tranquility, almost.

 

 

 

 

 

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