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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.

means: Shit we do when we have tough news in a medical appointment

Toilet and Parking. I always allow for extra parking time and toilet time before an appointment. I can’t hear anything if I am going to piss myself or I’m worried about the parking. Once I go through the door, the timeframe is not mine.
Have a folder. I have a nifty folder to put any print outs so they don’t end up in the bog of eternal stench or trash compacter that is my handbag. I love Kmart for this and, well, everything.
Take the roll. I get to choose who is in the room in a meeting and I can stop at any time and ask for my kids to be in the waiting room. iPads, Audio books, books and drawing are secret weapons at this time. If it’s not a waiting room I want them in, I have headphones and a movie at the ready.
Write it down. I have paper and pen and I’m not afraid to use it. The action of writing helps processing and makes the speaker accountable. I use it to slow things down and record the questions I can’t ask in that moment.
White down search terms. Make a note of any key google terms or websites.
Slow it down. When a meeting isn’t going the direction or pace I want it, I slow it down, interrupt or interject and clarify something. It buys me time. Doctors are frequent flyers with this, but this was my first rodeo.
Arrange a follow up call or email. I always have questions, so I make a time before I leave that room to have a follow up call or email. I am always more likely to get a response, if they know the questions are coming.
Be gentle. Commitments can wait. Have a kindness plan to look after each other. I just block out the rest of the day or night leaving space for some family down time.
Start a “things to ask” list. I put my questions somewhere so they don’t keep swirling around my head. I find the answers to most of them myself. Anything I can’t work out, I take back to my GP. She is more available than a specialist, and she bulk bills. (my link why you need a good GP)

tools: notebook grid for appointments

needs: I don’t know why we went to the principal

Her voice had an edge, a tear escaped, family and friends twitched a little, withdrew a little and even while the retelling was unstoppable, the look in their eyes, it’s like the look from the teacher, or other school mums, that look that says “crazy mama”. Except it wasn’t just the special needs mama in front of me, it was all the special needs mamas and it was me, I had the edge, the tear and frustration seeped out of me with every sigh. And hearing her story, of how she ended up in the principal’s office brought back ours.

The situation is impossible. It requires me to not give a fuck about what people think and focus on my girl’s needs. Just because I express it with the fatigue of a special need’s family, or the plea for an easier life, doesn’t mean I’m crazy. On the other hand, fuck it, most people are some shade of crazy because it is the inevitable by-product of a life well lived. Either way, it is the backdrop that permeates the medical appointments, the homework, the therapy, even when things are difficult with a teacher.

I had two meetings with her teacher. I kept records, but things hadn’t changed. So, I sent reminder emails. We then had two formal meetings. We had played the Dad card and my beloved had joined in. With each day, and each drama, I held back the rumble, reminding myself, there were other kids in the class, teachers are busy teaching, running a school and dealing with the overload required by modern Australian education. Each time I reached out, I coached myself to be mindful of all the demands on this teacher.

The teacher couldn’t understand that our girl needed more time and that putting pressure on her wasn’t going to incentivise her to work faster. He didn’t seem to understand that our girl wasn’t going to be able to learn things from worksheets corrected by her friends, or the degree of courage it was taking to raise her hand to ask for help.

Her Year 4 teacher decided that any work completed at home was obviously completed by parents. He failed to see that work completed without time limits, in a quiet setting and with support, might actually be different from the work completed in a noisy classroom in a limited period of time where there was little opportunity for reassurance.

Her Year 4 teacher didn’t miss an opportunity to take away points for not having the perfect uniform, or hair, or a bag being unzipped, or an untidy desk tub, or being last to be ready, which so often fell by the wayside when our girl’s brain was scrambled trying to keep up with the classroom transitions.

Her Year 4 teacher didn’t understand that the kid with the neurological diagnosis, that would finish work last would always be last to get the right book for the next subject and then start that piece of work last, after the instructions had swum away and not surprisingly not finish that work as well.

Her Year 4 teacher didn’t understand that concepts or ideas on a whiteboard, that were rubbed off quickly didn’t allow for someone who didn’t get things the first or second time to learn that new idea.

Her Year 4 teacher didn’t understand that placing her tub on the bottom row, meant that she would wait for other kids to get their stuff first and be the last to sit down and start work.

Her Year 4 teacher didn’t understand that an app or program was another series of steps to be learnt and relearnt in order to participate. Not all kids pick up and ipad and rock it.

Her Year 4 teacher didn’t understand the difference between an immediate answer and an answer that took a second was not an opportunity to feel stupid but actually the second it takes to make her feel smart.

Her Year 4 teacher didn’t understand that our girl doesn’t understand sarcasm, and to make jokes in relation to her learning is debilitating. “Yes, of course you have a question….” Making it less likely she would ask again.

Her Year 4 teacher didn’t understand that every time she told the class to pair up, it was another day when our girl felt like there was something wrong with her.

Her Year 4 teacher didn’t understand that it was getting harder to come to school and it didn’t seem to matter how many meetings we had, or notes we wrote her or requests we made or equipment we integrated or advice we followed the outcome was unchanged.

There was a fundamental chasm between our girls needs and the ability of the teacher to understand them. The collateral damage to that disconnect was our girl’s self-esteem and my anxiety.

By the time we made the decision to take our concerns to the Principal, it was too late. I didn’t know it then. We hoped it would fix everything. That’s a pretty big burden for a 20-minute meeting. We prepared and decided it would be a good outcome if we could find a way to support the teacher in making some adjustments for our girl. (Serve) The principal suggested we meet with the teacher and outline our concerns. (Volley) We demonstrated we had exhausted all other options for communication. We maintained we supported the teacher but that our girl was suffering and needed some extra assistance. We referred to the reports on file. (Baseline forehand) The Principal went through our concerns. She noted them down. (Baseline backhand) We felt heard. (Baseline forehand) The Principal was full of action words. We were to leave it with her and she would fix it. (Lob) Seemed like a good outcome. But was it? (Deuce)

That afternoon, I pick up my girl. She was distraught. The teacher and the principal had questioned her about what she found hard in the classroom and what she had told her parents. The principal had questioned her about absences and the teacher had gone through her work asking why she hadn’t finished. I was angry, sad, ashamed and I had to take her back there the next day.

A few days later, the teacher asked me to pop into the Principal. I walked into the office and was asked to sit. The principal had reviewed the situation (Serve) and I thanked her (volley). Then, in different ways and with the support of her deputy, and then another deputy, she confirmed that any deficiency in class progress was due solely to the absences of… no name “the child”. (volley) She went through the attendance stats. (lob) I found my voice enough to remind her that she had several appointments, tutoring and therapy (Out of court).

I took a breath. This was a different kind of meeting. I could feel my little girls hurt when she was questioned the day before. I confirmed our central cause for concern was self-esteem and that she didn’t like learning or coming to school anymore. (Serve) The Principal said that she had reviewed her work and it wasn’t the case that she was having difficulty, or participation, it was more a problem that she wasn’t in class. (Volley, Adv. Teacher) I thanked her for her time. I bolted through the car park and dialled my beloved, taking a breath before hearing his sweet voice.

means: When should you go to the Principal? Does this make you a dobber?

At some stage you are going to get a teacher who just doesn’t get the needs of your child. Whether it’s because they don’t understand, can’t be bothered or just don’t like being asked to do things differently, and they see it as over-sight, or whether there are just too many kids with needs in that classroom for them to get across it. There are good reasons and shit ones and the result is the same, your child is in a classroom for a large proportion of a year, where they are not learning or not feeling good about learning. There will be one teacher in the 13+ years of school, and you may need to see the Principal.

Pro tip 1. At the start of each year have a “heads up” meeting with the Principal. Less information is better. Give them a highlights reel so when they see your kid in the playground, on the stage or in class, they know what’s going on. Ask, is there anything I can do to support the teacher meeting my kid’s needs? This might tip the discussion towards aids, funding, special assistance but at the very least you have started a conversation about the school-family partnership.

Pro tip 2. If things in the classroom are untenable, make sure you let the teacher know before you take it to principal. Not in a way that says “suck it, I’m dobbing” and if that’s how you feel go for a run/coffee before you let them know. Remember you have to take your kid back into that classroom for the rest of the year and being honest and transparent avoids that being difficult.

Pro tip 3. Principals have seen most things and some have excellent ideas. They also have a lot of meetings with past and present parents. It may not be the first time someone has said these things. That doesn’t have anything to do with you. Stay on Target- your kid’s needs.

Pro tip 4. Any meeting should finish with a clear understanding of what would happen next and when you will meet again. That way everyone can be prepared and your active wear is clean.

Pro tip 5. Any meeting should be documented, you can take notes to make sure it reflects your understanding of the meeting. These notes are useful.

Pro tip 6. Use clear examples. Don’t be overdramatic. Hard I know. You are sleep deprived, low on hygiene, this is about your kid who has been crying, daily, for weeks, and you are probably suffering from scurvy because who has time for healthy homemade keto. Before that meeting, do whatever it takes to collect yourself because despite my kitchen dancing and sweary awesomeness, it seems meetings about my kid get better outcomes if I keep a clear head.

Pro tip 7. Make 3 points. Ask for 3 things. Keep it simple. Get results. Snowball.

Pro tip 8. Don’t forget positive feedback afterwards. When things turnaround, take the time and effort to discuss this with the principal. Put it in writing, it will end up on a file.

Prop tip 9. Don’t involve your kids in this discussion. It is hard to go to school when your needs are not being met, harder if you know your parents don’t have any faith in the person you spend the day with.

Here is the kicker. School is like anywhere. It doesn’t operate without the benefits and pitfalls of human experience. Not all teachers are going to be cool with this. Not all principals are going to be cool with a conversation like this. If that is the case, work it out quickly and make a different decision: When is it time to change schools? – post to come.

I have no rights to these guys or the films they were in but when someone says the Principal wants to see you, this is where my brain goes: