Tuesday, November 1, 2016

What I've lost and What I've Learned

I know it’s been a long…LONG time. I’ve had one hell of a past few months. And I honestly didn’t want to come out here and moan and groan about my life. So, I might have waited until I had something real to say. I might have been inspired by Jamie Lynn Sigler’s coming out about her Relapsing MS as well. I know she’s endorsing a treatment option, but it’s also about her accepting the fact that ignoring it would not make it go away. Her story is interesting because, while I came to grips with that sooner, it resonated with me. On one hand, by the time I got my diagnosis I knew something was wrong and the only way we could make things better would be to identify the devil we were dealing with. It was still a huge shock. It felt like part of me, my life and my future had been ripped away from me. I had yet to discover what I'd been given in return. 

It’s hard to believe that a year ago, around this time, when I started to get wacky, seemingly unrelated symptoms that what I was experiencing was the disease being active in my body. And at first, it was all about what was I’d lost, or what I thought I’d lost. But there’s a lot about me I’ve learned along the way. I learned the power of self-advocacy. Sometimes Google can be your enemy, right? In the quest for information, sometimes you get a lot of garbage. At that time, I was looking for facts, not people’s personal experiences. I’m personally a fan of supported, scientific evidence rather than a particularly vocal handful of people among the statistical outliers.

I’ve learned the power of the support of my care team. Our healthcare system isn’t perfect, and it’s expensive, but there are a multitude of options available. I like having doctors and nurses that listen to me. I don’t have to put up with those who patronize me or make me feel uncomfortable, especially when I’m a very receptive patient when I can trust that all my concerns are being addressed. Who knew that what I’d learned about my diagnosis process for MS would give me the tools to be a better parent.

My teenage daughter has always had an unusual personality. She worried too much, fixated on details to the point of being obnoxious about it, and had some social “quirks” that charmed adults who didn’t have to be directly responsible for her well-being. Those who had to take care of her would often come to me exhausted by navigating the emotional minefield that seemed to surround my daughter. There were moments that stand out while she was growing up that I now see in an entirely different light.

The fact that Sydney walks on her toes would be indicative of sensory issues. The fact that she once asked my husband, who had been upset by something while we were out shopping for things for our wedding, “Why is your face like that, Daddy?” I just thought that was an odd way of asking why he was upset. It never occurred to me that she was literally asking him what his facial expression meant. In 1st grade, she was a button pusher and a principal’s office seat warmer. I was asked to consider having her tested for ADHD. She came back as having anxiety, but counseling didn’t seem to be helping. All it did was drag up emotions that we’d have to help her reign in for the next three weeks until her next session.

She worried about everything. Anxiety would have been a perfectly logical explanation for how she reacted to the world. However, by the time she hit the 5th grade, I knew there was something more. When she went into 6th grade she told me she knew something was different about her, something VERY wrong. Her father, my 1st husband, was a major road block when it came to her doing therapy. I told her to go to the school counselors. If we could get them to recommend therapy, that we strongly suspected ADHD and she needed the help of a professional, my ex might be forced to listen.

“Something’s different, I’m different. No one hears me.”

I couldn’t get those words out of my head. It occurred to me that the “block” wasn’t anxiety itself. It was something about her ability to communicate that was off. But she was bright, verbal, VERY verbal. But she couldn’t handle sarcasm or humor sometimes. She didn’t hear her own tone of voice and often didn’t understand what we thought were clear explanations as to why her behavior had upset us at any given time. She would come off as stubborn, rigid, defiant, disruptive. All of them are behaviors of a dramatic teenage girl. But I knew there was more involved. If people weren't going to hear her, I would be her voice.

I needed help figuring it out. MS is a diagnosis by process of elimination. This became the case for my daughter as well. Finding credible sources to help me identify a problem that shares symptoms with a multitude of other things was next to impossible. I'm a mom, not an expert on behavioral health, or an educator. I was ready to learn how to be the kind of parent I needed to be. I just needed to know where to begin. I would guess, and not quite hit the mark. No one seemed to hear me either. And when they did, they were as lost as I was.

For over a year I would push the therapist to help us figure that out. And in the meantime, her unnamed issue would consume her life and ultimate would take its toll on her mental and emotional health. Time was no longer on our side if we expected to reverse that damage. It was so pronounced that even my ex-husband, who is absolutely stuck on not labeling what might be wrong with our daughter, was ready to recognize the elephant in the room. I was tired of the therapist who did nothing but patronize us. When she left the clinic and we were assigned a new therapist, it was a blessing.

I’m running out of energy. I can’t be on call 24/7. I put my foot down and asked the single most important question I would ask in all of this. “Is there something like Asperger’s Syndrome for people who don’t entirely fit the autism spectrum?” I mean it is a spectrum…right? The school psychologist listened to the school social worker, my girl’s guidance counselor and me list off behavioral traits. It took someone who’s only met my daughter twice before to encourage me to Google, “NLD.” That’s short for Nonverbal Learning Disorder, which is largely described as an inability to comprehend and properly utilize nonverbal communication.

I prefer the term “Neuro-atypical Thinker”, and I think she does too. It explains so much! I’m still in a bit of shock, because right now is nightmarishly hard. Though we caught on to this soon enough to do something about it, giving her the tools for a happy future we’re simultaneously dealing with the fact that things had to get bad for my daughter before I stopped allowing people to put me off and instead pushed for an answer. And knowing the devil we were dealing with gives us the ability to find solutions to our challenges. As relieved as I am, I cried. I’m heartbroken for the little girl that lost so much of her happiness as a child to us not understanding her. I can’t help but feel guilty for all the times I was angry with her for her behavior, for not “getting it” when I was the one who wasn’t “getting it.” Yet there’s a much brighter future for my daughter and for those of us who love her and my being diagnosed with MS gave me the tools to keep pushing for answers and to be an advocate for my daughter. 

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