Not Your Neurotypical Kid

I finally got an appointment.

We've been waiting for our littlest to get an evaluation by Children's Hospitals Child Development Unit. It's multidisciplinary, multi-day evaluation is the best at diagnosing the cause of quirkiness neurological issues in kids.

Let's be honest: we've all got quirky neurological issues.

But my baby girl has diagnosable issues. I've hesitated to share them here, because I wanted to preserve my daughters privacy. It's her story, and there are many pieces of her story that will remain hers alone. But there is a need for the people that love her and interact with her to understand what is going on, so they can help her.

Abby has organic brain differences - damage. It's caused by exposure to damaging substances while she was carried by her birth mom. Most people would not be able tell by looking at Abby that her brain works differently. And, in fact, IQ tests would not identify these issues. She's got a normal IQ; counter intuitively, this does not negate the damage.

People with this kind of damage have predictable behaviors that are a result of organic brain damage. They include:

-Poor impulse control. They will steal, because they have the impulse to take with no thought to the consequences, or even that it's wrong to take what doesn't belong to them.
-Difficulty with cause and effect reasoning. They literally do not always learn from mistakes, so punitive disciple is totally ineffective. Punishment doesn't work because it assumes cause and effect reasoning.
-Difficulty understanding abstraction. Concepts like money, time and ownership are a challenge.
-Rigidity. Abby has a strong need to finish things, or do them in a certain order. She really, really struggles to make transitions. Almost any change is stressful. This is very typical.
-Sensory Processing Dysfunction.
-Auditory Processing Dysfunction. They may appear to understand you, but chances are decent that they haven't understood fully at all.
-Dysmaturity. Often there developmental age is far younger than their chronological age.
-Memory Problems. What was that rule again? Oh and it applies at home and at school?
-Communication Problems. Their oral communication surpass their ability to understand language. So it appears that they have good verbal skills and are understanding instructions, but they don't. This is often mistaken for defiance.
-Difficulty regulating sleep wake cycles.
-Unpredictable good days and bad days.


All of these struggles present in behavioral problems. On a bad day it appears that children with this kind of brain damage are spoiled, naughty, and out of control. As adults, the same behaviors can land a person in jail. It is all too common.

Eddie and I are learning that to effectively parent this little girl of ours we MUST look beyond behavior. Behaviors are cues that tell us she needs help. So we're learning NOT to parent behavior, but instead parent needs. It's a gigantic paradigm shift, and difficult to do.

So when Abby gets out of bed 6 times after we've told her not to, we are tempted to give her greater and greater consequences. It's usually totally ineffective. Warn. Spank. Bark orders. Threat more consequences - it just doesn't work. We've got to remember her brain is damaged so sleep is hard for her. Impulse control is hard for most preschoolers, and nearly impossible for her. Plus, she truly may have forgotten (though in her case - I doubt it.).

What works? Predictable routine. Simple language. Repetition. Warm milk. Melatonin supplements. Baby gates. It is far easier to avoid the problem all together, by setting up our daughter for success.

We would accommodate the needs of a child who is a paraplegic. We'd build ramps, and buy wheel chairs, and modify the layout of our home to allow for the most independence and success. Organic Brain Damage must be seen in the same way. The brain is somewhat pliant, but the damage is permanent. We must create an environment for success.

We keep our home calm. We establish routine. We lock up dangerous items, and secure doors. We use simple language. We repeat. We offer grace. We model correct behavior - try to move daily independence activities into long term memory. We minimize transitions, and are careful to not take Abby places where she will go into sensory overload if she's having a bad day. We learn techniques to help her regulate.

And most of the time, if we're doing our job well, and she's having a good day, you wouldn't be able to tell she is anything other than a typical kid.