A Sister’s Wisdom

Wisdom Tree

Today I feel like I’ve been searching for a forest among the trees. It took a conversation with my sister Gretchen to convince me to keep my 5th grader home from a field trip this Thursday because she is sick.

She has no fever, coughing, sneezing, or vomiting. She has a mental disorder.

Samantha was born extremely prematurely at less than 25 weeks gestation. She weighed only 1 ½ pounds at birth and spend 13 weeks in the Neonatal Intensive Care Unit (NICU) before coming home. She has a lot of physical challenges due to her prematurity; Hypotonia Cerebral Palsy which is very low muscle tone; Hydrocephalous, the build- up of fluid in the brain (she has a shunt to drain the excess fluid to keep pressure off her brain); and Nystagmous, a neurological disorder that causes shaking in the eyes, just to name a few.

The first 3 years of her life were a whirlwind of physical, occupational, and speech therapy. We were elated when she was able to sit independently at 2 years-old and started walking just a few months shy of her third birthday. We were confident that the worst was behind us and all our “Little Peanut” needed was to grow and get stronger with continued therapies.

We were actually excited when she had her first real tantrum around the same time because that was an indication that her brain (which had been damaged by the hydrocephalous) was developing normally. As first-time parents, we took the tantrums in stride and dedicated ourselves to learning positive parenting methods—specifically “Love and Logic” which emphasizes natural or logical consequences for behavior instead of straight punishment. Oh happy day! Aren’t we just marvelous parents?

But even in my ignorance I felt like her tantrums were more intense and lasted longer than the situation would indicate. They would also occur when she was over-stimulated or had been in a noisy environment. I had to bite my tongue every time I heard someone say, “Well all kids have tantrums. It’s no big deal.” I was dismissed as an over-anxious, or inexperienced mom. I felt like it was my fault because I was the one who was home with her all day. Was I over protective? Too harsh? Too soft? Not consistent in my parenting? I can honestly say ‘yes’ to all of those at one time or another. I just assumed that because she was a preemie, she would eventually grow out of those behaviors even if it took longer than a ‘typical’ child.

However as she grew, her tantrums (which were actually rage episodes) became more severe and violent—throwing things, hitting, kicking, etc.  Is that normal for a 5 year-old? A 10 year-old? I was losing count on how many times I had to fireman-carry her out of public places because she would lose all control over seemingly insignificant things. Seeing someone carrying a guitar case (she has an irrational fear of guitars) or hearing the “ding” of an opening door are just some examples.

After years of trying to parent through the behaviors, we finally screamed “Uncle!” And sought out professional help. We took her to a neurologist to have an EEG. It was then that we FINALLY had a diagnosis. Samantha has a disorder called Episodal Discontrol Syndrome (EDS). It is a seizure-like disorder that causes her brain to “misfire” all day and night. She has never had actual seizures, so we only saw the symptoms of EDS.

Here are just a few:

  • Violent outbursts
  • Obsessive Compulsive Disorder (OCD)
  • Extreme anxiety
  • Hording and ritualistic behavior

And as a special treat…

  • Attention Deficit Disorder (ADD)

It is hard to see your child in such a clinical way since it speaks nothing of the amazing, loving, talented, artistic, caring, passionate, articulate child we love beyond words. Our daughter is sick and needs medical intervention.

At the time it seemed that her rages were anxiety-based (Don’t even get me started on how freaked out she was the entire month of October to the point where she almost couldn’t leave the house). So she was put on anti-anxiety meds and we went along our happy way.

Yay! Finally Samantha can start to interact with her world and others in a healthy way!

There would be ‘break-through’ tantrums, but we figured as long as they were not as intense, it was a win. Well that’s like saying if you only vomit once a day instead of 5 times, you are healthy.

After a year the medication only seemed to be taking the edge off her symptoms but not giving her the kind of relief that would help her to succeed in school or interact appropriately with her peers. We had just moved from Arizona to Tennessee and I dreaded the whole process of seeking out new doctors. It actually turned out well because we switched her treatment from neurology to psychiatry.

Just last Tuesday Samantha’s psychiatrist changed her medication from Zoloft (anti-anxiety) to Risperidone, an antipsychotic medication used to treat schizophrenia and bipolar disorder.

This adjustment is not going well.

It could take months for the doctor to dial into the right dosage. In the meantime, she is having several rages a day and it is taking a toll on all of us. My daughter is sick and we are desperately trying to help her. She cannot control her anger and it scares her younger siblings so we have to keep them separated every time she gets upset. Until we can get her symptoms under control, we have to be careful to control her environment.

Tonight Herb and I are going to have to explain to Samantha why she cannot go with her class on Thursday. I was willing to let her go on the trip just to avoid dealing with her disappointment—and more to the point—her reaction to it. I am so grateful to Gretchen for her boldness in telling me that I was making a huge mistake.

I was so focused on maintaining peace in the house that I couldn’t see how having a rage episode in front of her class would hurt Samantha more in the long-run. My heart aches for her but I know with Herb by my side, we can see her through this.

In our family we take things day-by-day and sometimes minute-by-minute. Our lives revolve around the details. It is exhausting, but as I sit back and take a deep breath, I can see the majesty of the forest. And for a moment, I am not blinded by the trees.


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