Guest blog: Life in Shadowland (or, Things I Wish People Understood about Having a Child with a Neurodevelopmental Disorder)

Today’s guest post is by Kelly Schmidt, mom to Nathaniel, and Ph.D. candidate in a developmental psychology program. For Kelly’s full bio, see the  bottom of her post.

 When Kevin and I were married 10 years ago, we understood that there were no assurances that we would have a child because I have an endocrine disorder that causes fertility problems.  Nobody was more surprised or excited than us when we learned 2 months after our wedding that we were expecting.  I chose the name “Nathaniel” very deliberately because it means “Gift from God”.

Nathaniel has a BIG personality.  His smile is high wattage, his giggle is contagious.  He is scary-smart and has an amazing memory.  Sometimes he is so thoughtful and concerned about others, he takes my breath away.  He has a very strong faith and knows more about the Bible than many adults.  He loves sports (especially basketball), Legos, video games (much to my dismay), and reading (which makes me proud), and his brother Joel.  He likes to draw cartoons, help make pancakes and cookies, and talks about Pokemon and Mario Bros. endlessly.  He is 110% boy.

Nathaniel also has behavioral and psychiatric disorders.  The behavior disorder is called Attention-Deficit Hyperactivity Disorder, also known as ADHD.  The psychiatrist calls his psychiatric disorder a “Neurodevelopmental Disorder” but since insurance companies don’t reimburse for treatment of that, she calls it “Mood Disorder Not Otherwise Specified (NOS)” for billing purposes.  He has some features of bipolar disorder, oppositional defiant disorder, anxiety disorder, and even Aspergers syndrome.  He doesn’t meet clinical criteria for any of those disorders, however, because he is typically not symptomatic anywhere else but at home.

Home is where the explosions occur.  Home is where there is defiance, anger, and violence.  Home is where frustration boils over to punches, requests lead to rebellion, and yelling and tears are almost daily occurrences for all members of the family.  Peace is fleeting.  Quiet, dreadful anticipation of the next meltdown or outburst is the norm.

It is a lonely and shameful place, here on the edge of two worlds.  We seem to belong in the world of families with “typical” children because to almost everyone Nathaniel appears to be a “typical” child.  But, he is not, so we don’t.  We don’t fit neatly into the world of families with children with special needs either.  Learning disabilities, mental retardation, autism – people “get it” when a child has a diagnosis like that and they feel compassion for the child and family.  Families of children with visible or recognizable special needs face many challenges, but there is usually a network of support for them – support groups, special education services, therapies, teams of knowledgeable medical professionals.  I don’t think anybody has sponsored a walk-a-thon for neurodevelopmental disorders.   We live in the shadows of those two worlds.  Alone.  Frustrated.  Afraid.

Shadowland is dominated by fear.  Fear is a primal emotion.  Fear activates the brain’s “fight or flight” response.  Countless parents over the centuries have chosen to fight their fears in response to a threat toward their child, maybe even laying down their life to save their child.  What is a parent to do, then, when the threat they face, the fear they feel, comes from the very child they innately want to protect?  Who wants to live in fear of their beloved child?  I don’t want to, but I do.

I have been punched, slapped, kicked, bitten, pinched, and head-butted for years.  During the 3 months that we had him on stimulant medication for the ADHD, he attacked me daily.  Learning karate has been a great thing for Nathaniel, but it has made him strong and his physical actions have power.  Last summer, he slapped me across the face hard enough to make my nose bleed.  A few days later, he threatened me with scissors.

Sadly Nathaniel’s little brother has been a frequent target of physical aggression as well, probably more often than me.  Joel has witnessed most of the violence directed at me, including the bloody nose incident.  I worry so much about the impact of this on Joel’s emotional well-being.  Kevin and I try to protect him as best as we can, but the violence still occurs on too-regular a basis.  And so there is guilt, and sadness, in Shadowland.

Life in Shadowland means frequently feeling helpless, ineffective, beaten down, and demoralized.  It is so ironic that one of the main topics of my dissertation is parenting self-efficacy – the notion of feeling both confident and competent to complete the task of parenting.  My self-efficacy with Nathaniel is generally very low.  The “usual” parenting strategies do not work with him.

So life in Shadowland also means that we must search, question, research constantly.  Maybe this book will have some answers.  Maybe this professional can help us.  This website, that therapeutic technique – or this medication.  The day the psychiatrist prescribed an “atypical anti-psychotic” medication as a mood stabilizer, I cried.  Who wants to think about their child taking a medication like that?  But it has helped – quite a bit, actually.  For that, we are very grateful.

Life in Shadowland means being on edge most of the day – scanning, searching, evaluating, predicting.  What will set him off this time?  Has he had enough sleep?  Did he eat recently?  Being overly tired and/or hungry lowers his threshold for problems.  Can we safely get through this event, that outing, that trip or vacation without incident?  So much unpredictability, so much stress.

This hypervigiliance comes at a cost.  It is exhausting to live in Shadowland.  Watching, waiting, negotiating, managing, reacting, calming, containing, cleaning up – it sucks me and Kevin dry.  Parenting these days is not as physically tiring because the boys are able to do so much more for themselves.  The mental fatigue is unbelievably overwhelming, however.

Living in Shadowland requires thick skin.  The heart-stabbing pain of being the focus of your child’s rage and violence is beyond words.  It is not easy to de-personalize the experience, but you must.  Faulty neural wiring and biochemical breakdowns are the root causes of his behavior, not some flaw in me or Kevin.  Some of you reading this may think that our parenting styles have caused Nathaniel’s problems, or that I am exaggerating the seriousness of the situation.  I will be the first to admit that Kevin and I have made, continue to make, and will make mistakes in the future, but we did not cause him to be this way.  But you believe what you want – I have thick skin and I know the truth.

That brings me to the worst part about living in Shadowland – the absolute isolation and loneliness we feel.  We are, by definition, hidden.  I know of only one other family living with a child who is a little bit similar to Nathaniel, except that her challenges are present in all settings, and she is adopted.  I really don’t know another mother who scans the room for sharp objects when her child starts to become upset, or who has had to stop on the highway to place car seats in separate rows in the minivan so that one child can be protected from the violence of the other child, or who rejoices over a voluntary apology for an earlier abusive attack by her child.  On the one hand, of course I am thankful that he does not display this behavior at school or church with other children and adults, but on the other hand, I feel ashamed and embarrassed to explain to his teachers that they get the Dr. Jekyll while we get the Mr. Hyde.

Naturally I have spent a lot of time trying to work out the “why’s” – Why is Nathaniel like this?  Why me, Lord?  But that is the best part of living in Shadowland – I have been forced to my knees over and over again to seek comfort and courage.  I have latched on fiercely to God’s promises in Jeremiah 29:11 and Romans 8:28 that He ultimately has a plan for me and for Nathaniel that He means for good, not for evil.  I have to remember that we are created by God in His own image to suit his purposes and that he does NOT make mistakes.  The refiner’s fire is not an easy place to be and I often beg for relief, but He is an On-Time God so I must trust that He will bring me through this time of trial.

I don’t know if we will always live in Shadowland.  Nobody can tell us Nathaniel’s prognosis, although both his psychiatrist and psychologist are guardedly optimistic based largely on the fact that he does not have problems in settings other than at home.  Lately we are having more good days than bad days, so for that we give thanks.  My motto is “Prepare for the worst and hope for the best”.  If we have already seen the worst, praise God.  If not, I must still praise God because He is in control, even in Shadowland.

Kelly Todd Schmidt is a city girl from Pittsburgh married to a country boy from Iowa; they split the difference and have lived for the last 11 years in Columbus, Ohio with their 2 boys (ages 10 and 6), a large garden, and a dog who is probably diagnosable on the DSM.  In her life BC (Before Children) Kelly worked as a social worker and developmental therapist in a birth to 3 early intervention program, then enrolled in a Ph.D. developmental psychology program.  She now has the dubious distinction of being one of the longest enrolled grad students in program history but is set to graduate this December and in the meantime is making it with the help of good contemporary Christian music, tea, dark chocolate, Clorox wipes, and the Food Network.  

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11 thoughts on “Guest blog: Life in Shadowland (or, Things I Wish People Understood about Having a Child with a Neurodevelopmental Disorder)

  1. Just wanted to let you know that I ‘get it.’ Each and every word you wrote. Please know you are not alone (unfortunately for us!!)

  2. Pingback: Book Review: Easy to Love But Hard to Raise | Carolina Health Care

  3. My daughter also only has violent, abusive outbursts at home and/or to her father and me. She does great in school, church or at other people’s homes. Yesterday she hit me, tried to bite me and tore my shirt after she was asked to help unload the car. Which her four-year-old brother willingly and cheerfully helped with. It does help to be vigilant with her sleeping and eating, and not to over pack her schedule, although it makes me sad she needs to miss out on so much, such as sleepovers, family weddings or other events that happen “after hours”. Lord, help us with these precious children so they may grow to be happy, healthy, productive people. And also help us, their families, so that we may survive their growing up without being mentally, physically, emotionally and spiritually destroyed.

  4. I just read the article and cried. This IS my daughter and I feel so alone. I just got back home from yet another doctor and with no luck of understanding. I would love to get in touch with the author. I need to get some resources.

  5. I “get it” too! There are supports both educational and social for our A- typical children and families. Please check out your local or state chapter of NAMI. nami.org.

  6. I could have written this myself (well, if I were a better writer than I actually am!). It is so reassuring to me to know that I (we) are not alone in this, that our daughter is not the only child with these symptoms and behaviors, and that there are people who *get it*, even if the people in our day-to-day lives do not.

    Thank you!

  7. Beautiful. The words could have come from my mouth. I understood every word. The only difference is that I am a single mom now and I have 3 kids, 2 with bipolar/adhd (12 yrs and 7 yrs.) The 3rd one (7 yrs) is PTSD because of the violence and abuse she has endured her whole life from her older sister and twin brother. God bless us all and most of all, God bless our babies.

  8. Our daughter is nearly 10. We also prayed for her. We adopted her at 25 months. She has FAS as well as ADHD. Thankfully, she is mostly non-violent. Both FAS and ADHD are invisible. That makes it very hard for others to understand what we go through with her. Her younger brother is her verbal & physical target most of the time. I’m now on meds, dh will probably be on meds soon. It is VERY, VERY wearing.

  9. I so get this. I have a 9 year old son that is like this with his Dad. I thought that maybe it was his Dad bringing out the worst in him. I am so stressed and drained from it!

  10. Wow! I so get it. This sounds a lot like my daughter. She was finally diagnosed with autism at the age of 12 and we are finally doing behavior therapy. People are finally listening to me! I have told the doctors since she was 2 that there was something wrong with her but no one listened! She was so good and compliant in public and with others! It has left me depressed and exhausted not knowing what to do. Thanks for sharing about your struggle. It is a lonley place here in the “shadowlands”! Makes it worse when no one gets it, yet are quick to give advice!

  11. This is my son. His behavior only shows at home. He has very high anxiety, though so I think he is just to anxious to let himself act out in any other setting. We have just started down the path of getting some help. September 15th seems so far away.

    I’m so glad I stumbled on this site.

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