Medical

needs: Her first clinical psych assessment

Diagnosis was the beginning. What followed was a series of assessments to determine the best way forward.  For us it was blood work, an EEG, an MRI, clinical psychological testing, occupational therapy, auditory processing and speech therapy. It was expensive and time consuming. Much of our energy was spent on scheduling, traffic time and parking. It meant more school absences when she was already behind academically and socially, separation for her brother and pressure at work for her parents. 

For a period of about 5 months we were taking her to unfamiliar places, with strangers, who pushed her beyond her comfort zone. The assessments were – Repetitive. Targeted. Spotlights. Designed to test her until the point of failure. Some tests stop when there are consecutive wrong answers, making inability and weakness the goal.  With each appointment there was less of her, and more of a patient. Assessments are kryptonite to a family’s means and needs. So why do them?

We did them because we were told to.  That’s the rule follower I was then. We put her through multiple assessments because we were lost and the diagnosis came with a road map that led us there. The first clinical psych assessment embossed the part of me that connects my heart and brain. I trusted a professional with the care of my girl and he was deficient in a way that watermarked my mothering. Now I have my own roadmap.

Being sent to a clinical psych was a bit of a shock for me. I honestly didn’t know what they did and assumed that at 5 I had a little longer to completely mess her up before she needed therapy. I think a lot of people feel this way because the late book at school usually says “appointment” but if its braces it says “orthodontist”. We were told this clinical psych was good because “he could do the auditory stuff as well”.  Convenience really shouldn’t have been a concern for us. My beloved confessed the phone call didn’t give him a good feel but we didn’t act on that. We knew it would be around $600 and we would “get some back later”.  We had an address and knew it would take a whole day. This is where I wow you with the questions we asked and the research we did, but we didn’t.

She was pretty excited about having a day out of school and spending a day with her mum. We drove across town, singing and chatty. This is the part where I could wow you with the careful preparation I did with her but I didn’t. Traffic was shitty and we were in a part of town I never liked as a teenager so it made me gloomy to cross into territory melancholia. Parking was a freaking nightmare and by the time we got in there I was glowing with sweat stress, dragging my angel behind me.

We met the old gruff bastard.  Believe me, they are the kind words I use to describe him 7 years on. He showed us into his crappy room where he had obviously reserved the one without natural light and set it up with a range of old furniture for adults. He showed me to a seat outside his door reminiscent of the principal’s office that had the added bonus of being beside the toilet. He sat our 5-year-old girl on the wrong side of an adult desk with her legs hanging off an old chair, for 6 hours of testing. This is where I impress you with my advocacy and tell you how I didn’t let a stranger take my girl into a room and close the door, but I didn’t.

After 2 hours he opened the door and she came out.  She was smaller.  He muttered about a break.  We cracked the lunch box while he stood over me talking about his qualifications. One thing I have learnt is the specialists with super powers don’t need to tell you about it because a thousand other people have and you had to donate a kidney to get an appointment. My girl and I shared a cuddle and he took her back in.

Two hours later, the door opened. She was smaller still. I had begun texting my beloved crazy shit. I had alarm bells ringing but I was frozen. More muttering about a break for lunch. This is where I could tell you I took her to a nearby park and gave her some fresh air and got her legs moving with some climbing before we had cuddles on a blanket and found animals in puffy white clouds, but I didn’t.

We sat on the chairs outside his office and she moved through her lunch box. My girl was sad but didn’t want to offend him. She whispered without words, desperate sounds. I was only catching threads about ‘not getting things right’ and ‘he was grumpy’ and she ‘couldn’t reach the desk’. And yet the shit show went on, the break was over and she was back in there. It was 24 hours too late to google things like “how to find a good clinical psych” but I did.

After the last two-hour session, he invited me in.  I was braced for the bad news, because I couldn’t imagine this man saying anything good. As she buried herself under my arm, he sprayed words like “abnormal, unsatisfactory, out of range, serious concerns” with authority. I nodded and she soaked it all in. This is where I tell you how I cut him off and indicated I would wait until I read his report, but I didn’t. He referred to his forthcoming report and its many recommendations. I already knew there was nothing in it for us. He asked me for $600 and I gave it to him. This is where I pray she doesn’t remember the day I took her to a dickhead, who made her feel less than who she is, and paid him for the abuse.

We got to the front door and she made a run for it. For the first time, she ran on to the road. And do I blame her?  I scooped her up and we walked into a bakery. I bought her the largest gooiest piece of sugar that desperation can buy and she wolfed it.  Next door I bought her a blue and white striped dress that she would never wear. I peeled the parking ticket off my car and she fell asleep as I called my beloved and cried. 

needs: Diagnosis

My beloved and I were in a small consulting suite looking at a doctor. We were wearing ‘good parents Sunday best’ dress. We were there to discuss the results of her EEG. My eyes flinched from the drab office rooms. Good news was never given in the muted tones of salmon and paired with a faded Monet poster. My sigh evaporated. She was giggly. An unexpected day off school with her parents and minus a brother put the magic in her eyes.

The appointment so far seemed straight forward. Enough so that I began to relax. It was kind of fun to watch our bubbly girl charm the doctor. He measured, weighed and chattered to her. She confirmed she was 5, had a brother, liked to dance and eat cannoli.  She skipped out to the waiting room and took all the joy with her as well as his super enthusiastic voice. The door closed, he said “There is a subtlety to her kind of epilepsy that can be challenging.” I stopped breathing. I didn’t see that coming.

In movies there is always a serious announcement, followed by a genuine empathetic look from the doctor and a pause. There is a second where people pick their hearts and brains off the floor. For us, this dead weight revelation was dropped incidentally. My mind scrambled as he waved a glossy chart of 40 different pills around. After he said the word epilepsy, everything he said hung in the air between his lips and my brain. I glanced around those words to the door. I wanted to hold her, outside of that room. Beyond the door was a world where she didn’t have epilepsy, yet. I wanted desperately to be on the other side of that door.

“Can you stop for a minute?” my beloved said. And the air in the room shifted. My beloved had stopped the autopilot download of information from the wise and well-travelled breaker of parents’ hearts. My beloved firmly asked him to stop again and I looked back from the door to my beloved. He was twinkling in the sunlight from the window for a second, was washed in a golden armour.  In the toddler years, my beloved didn’t leave me breathless often, but there it was.  I believed he was going to ‘return to sender’ the epilepsy. That was where my mind went. Instead, he took it like an unwanted jacket and put it on. “This is the first time anyone has said …. epilepsy to us, and we need a minute, we will have questions and we need some basic information.” It felt like a betrayal. I drew another breath and switched. I loved him hard for that shift. It was the first time he had changed the tempo and the rhythm of a medical appointment. Now he plays it like a party trick.  We all do.

The meeting slowed and the doctor started to print things off his computer and hand them to us. There was a sheet on epilepsy and support groups. There was a sheet on medication. There was a sheet on the tests she had to have. There were lots of sheets and I shoved them into my handbag.  When the doctor was done he stood and moved to the door. Without the answers to the questions we couldn’t voice, we followed and left the room. We paid the money we didn’t have, for the information we didn’t want, and rebooked for the appointment we were already dreading. The three of us floated to the car on a cloud fuelled by her chatter. That drive was the first time we spoke silently in small hand touches over the gear stick while she sing sang to us from the back seat.

As a working family, the day was pre-planned. My clients were seeping into me via emails, and his work was tapping him with the pulsing light on his phone. I was dropping him at the office, and her at childcare, before going to work. The plan was to slip back into our life, as if nothing had changed. I followed the plan. It seemed a good enough place to hide.

Later, my phone was persistent, and it was irritating. I was busy and had something to sort out. I was not in the mood for multi-tasking. I looked up searching. Scanning for what I wanted. Everything seemed out of reach and harder. My phone was demanding. I reluctantly answered unleashing an impatient “Yes”-*sigh* combination on the caller.

“Where are you?” my beloved asked quietly and calmly.

“I’m just taking care of something.” I said, trying to sound vague.

“I shouldn’t have come to work. I should have stayed with you.” His confession didn’t sound like the captain of industry that usually called me. 

“Oh, its ok. I’m fine.” I had a Stepford, ever so controlled response. I wasn’t in the mood for compassion.

“Where are you?” He wasn’t going to be fooled. Fucking background noise.

“I’m just buying a Barbie campervan.” I confirmed matter of factly.

“Yes, I’ve heard that cures epilepsy” he said and laughed quietly as a single tear crawled down my face. I laughed too.

“I’m coming home” he said.

“I’ll see you there” I rushed toward the register (with my campervan).

We were all going to be together. This called for Doona Island.