Necessary Conversations

Grace has a BFF.  They love each other.  I think that Grace feels relatively normal in her life largely because she has her BFF.  I don’t know what Grace would do if she lost that friendship.  BFF comes to our house frequently.  She’s an only child, and she seems to love the chaos that pervades our home particularly at meal times.  BFF sits at the end of the table and listens to the girls talk, chat, and argue, and she giggles throughout the meals.  I ask her what she thinks of our House of Crazy, and she says that she loves it.  I’m an only child, too.  I liked homes with lots of kids as well.  It was something I wished for but never had.

Well, I got a phone call yesterday from BFF’s mom.  It was the phone call that I’ve been waiting for.

“Hi, this is Cate.  Um…this is awkward.  But, I know that Grace and BFF want to have a sleepover, and I’m not comfortable with that.  What’s going on with Grace?”

There it was.  This conversation was long overdue.  My heartbeat quickened.

“What do you know? What is your understanding presently? I want to start with what you think is going on?

“Well, Eadaoin told BFF that Grace went into the hospital because she hurt herself, and I don’t want BFF to see Grace do something like that.  I think we heard that she has schizophrenia, but I think that’s rare in children.”

“Okay, some of what you know is true, and there is some misinformation.  Grace was hospitalized in order to change her medication.  She was experiencing self-harming ideation, but she was doing a good job on not acting on it in any meaningful way.  She was reporting it to us and her teachers.  She was taking a medication called Lamictal, and that can be a dangerous drug to stop taking.  So, her psychiatrist wanted to hospitalize her and decide what drug to replace it with.  We all together chose Lithium.  This drug is doing its job pretty well, and, so far, she’s not experiencing any kind of ideation.  And, she’s not hallucinating either.  She does have early-onset schizophrenia, but that’s a heavily stigmatized word in our culture meaning it might mean something different to different people.  Some people confuse schizophrenia with Dissociative Identity Disorder which it is not.  It’s actually a neuroprogressive disorder meaning that, over time, the brain loses white matter.  There is an aggressive form of schizophrenia that can cause up to 20% of tissue loss in the brain on par with Alzheimer’s.  The reason people hear voices and hallucinate is because one part of the brain that schizophrenia affects is the parietal lobe which is where we process sensory input.  The other part is the frontal cortex which is responsible for decision-making, executive planning, and working memory.  There are currently three theories attempting to explain schizophrenia’s etiology.  One centers around pruning.  Pruning doesn’t begin until early adulthood which would explain why schizophrenia is rare in children.  The second centers around demyelination much like in MS, and the third centers around neurotransmitters.  You will hear the word ‘psychosis’ used to describe schizophrenia, and that’s another word that our culture has borrowed and applied meaning to.  People will say, “That murderer was psychotic!”  Psychotic simply means that someone is not attached to reality–they don’t know what is real.  Schizophrenia is, therefore, a psychotic disorder because, due to what is going on neurologically in the brain once schizophrenia has taken hold, an inability to know what is real in one’s environment manifests.  There are medications classed as neuroleptics and antipsychotics that help the brain function better.  There are also mood stabilizers.  One thing to understand about Grace is that she has never externalized and harmed anyone.  She presents oddly in that way.  Grace has always been a docile, sweet person.  If anything, she internalizes.  Does this make sense to you? I want you to feel comfortable asking questions because that’s how we remove stigma from mental illness.”

I had explained as clearly as I could what schizophrenia is, and I could hear on the phone that Cate was much calmer.  She expressed that she had no idea what schizophrenia really was.  She was deeply saddened by Grace’s prognosis particularly by the idea of loss of brain tissue.  I went on to explain that I would never let her daughter come to our home if I thought she would be exposed to something harmful, and I have, in fact, said ‘no’ on occasions when Grace was unwell.  I asked her to trust my judgment as far as Grace’s well-being and state of mind were concerned.  If a playdate or sleepover were requested, then I would be sure to make a sound judgment around Grace’s ability to socialize.  Perhaps a playdate would be okay but a sleepover would be too much.  It’s hard to trust another parent with the well-being of your own child, isn’t it? These are difficult conversations, but I admire Cate for calling me and taking the risk.

BFF and Grace had requested a sleepover this weekend, and Cate and her husband said ‘no’ because they were afraid.  After our conversation yesterday afternoon, Cate called me a few hours later and said, “Is that sleepover invitation still open?” BFF and Grace are now running wildly around our house like crazy, loud 12 year-old girls do.  I am so glad that Cate and I were able to talk openly, and I do know that not all parents would embrace Grace.  Grace, however, isn’t the only one blessed by this wonderful friendship.  I told Cate that BFF is learning something from Grace, too.  When BFF comes to our home she’s immersed in a home with an ASD child, and her best friend has schizophrenia.  She is learning to see beyond people’s diagnoses.  She is learning patience and empathy.  She is learning that while people might behave strangely at times, underneath their behaviors they are still lovable and worthwhile–worthy of friendship.  You can’t teach that in a school or buy that in a store.  You only learn that through experience.

I know that kids grow up and make new friends, but I hope that Grace always has her BFF and her BFF always has her.

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10 thoughts on “Necessary Conversations

  1. It takes a strong woman to be able to ask those questions and not run away, but actually come closer. She sounds like a great person and her daughter is a blessing.

  2. I love this post. It shows what can happen when we build bridges in our relationships. They allow for back and forth dialogue and the ability to stay firmly on the ground or take a chance at crossing the bridge.

    In this situation I think everyone wins. So glad Grace found a BFF.

    • It turned out to be a positive. I was very nervous in the middle of the situation hoping that it would result in a win-win. I know how important this friendship is for Grace. Thanks for commenting.

  3. This was a heart warming post. I am so happy to hear Grace has such a good friend. I was afraid of where this might be going when Cate called. Your daughter is a lucky girl for having you as her mom, and finding a friend with parents willing to look past a label.

    • I was afraid, too. When we were talking I was running possible outcomes, and I saw how much Grace had to lose. Fortunately, BFF is a tenacious friend and ever-committed, swearing her unconditional friendship to Grace. Cate and her husband had to come to some sort of compromise, but, I think, after we talked they realized that they didn’t need to do that. Grace is a good friend. She just has some deficits.

  4. Fantastic post…having a child that was totally ditched for her sixth birthday party by all her ‘friends’ (im bravely attempting one more party and this time having her sister invite her own BFF who adores Baby, and a couple of my friends with children her age so it can at least turn into a playdate if no one from school shows) its nice to see these kind of out comes. It sounds like a loving and lasting relationship on both ends<3

    • I think this is a rare outcome. We live in a fearful society. The last birthday party we attended, the entire DSM was represented from ASDs, 3 Axis I DXes, two Axix IIs, to two rare forms of epilepsy (epilepsy used to be in the DSM). And, that was the under 6 crowd! Grace felt right at home. I just read a website that described schizophrenia as DID. People, in general, are fearful, and rather than just take a rise and ask some questions, they pick up pitch forks and torches. It’s a problem, but, little by little, if we are “hard to offend” and easy to talk to, I think it will get easier. I REALLY hope that Baby has a good birthday because every kid deserves that, and every parent needs to see their child accepted and loved by at least a few people.

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