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needs: Siblings – a brother and so much more.

My family was watching Wonder again. We all freeze, when Via, says “August is the Sun, Me and Mom and Dad are planets orbiting the Sun”, even Via’s metaphors are in terms of August’s interests. My family holds their breath, as if my boy doesn’t already know he is our Via.

My neuro diverse girl is dreamy – that can be scary for her but for her younger brother, it is a constant hum of frustration. Can you imagine your primary play mate, for your whole life, zoning out? Leaving the game, the show, the conservation. For years we didn’t know why she was dreamy, and for years we didn’t understand why he would bring her back with his pudgy toddlers’ fists.

Later when he was 8, and we were at taekwondo a light went on in him that we haven’t been able to fully put out. She lunged out of the way and ran full pelt, head down into a brick wall, just as two other dudes ran into her. Bone and brick at full speed was followed by a sharp collective in-take of breath. This terrifying silence was broken by a howl, not hers, but his. He was close to the action and instinctively he howled “Mum”. By the time we parked at the hospital, I couldn’t leave her. I charged him to get a nurse and a wheel chair. I don’t know what happened to him the minutes we were apart, but a nurse came and I went with my girl. There was an hour or so before my beloved came and I recall my boy there, squashed in the cubicle, on the floor, under the seat, finding blankets, being as still as possible and not daring to speak. It all washed over him and into him. I know there were moments where I left him in hallways or on chairs, and I will never know what his world looked like from there. Feelings and fears exploded for him that day and they repeat now when we least expect it.

In the 6 months that followed, we just couldn’t make it to his activities, or have sleepovers, and his world became smaller, wrapped around hers. He began a new school, and made new friends in default mode. We got him there, but we couldn’t support him. It was a miracle that everyone was fed and bathed. My boy began to check on her, in the morning and before bed and then in the night. After 3 months when she returned to school, I won some time away from watching over her but he never did. The reports began, “she’s not doing so good”, “better after lunch than before”, and “her relief teacher doesn’t get it”. Slowly he began to stop listening to grown-ups, telling them what to do, walking out of his class, to make sure she was ok. And people would say “He is so good with her”, “He told us what would be best” and I wished for a world where he didn’t have to.

He is 11 now. He is still finely attuned to her needs: on a scale of 1 “living it up” to 10 “this shit again”, but frustration has moved in. He still disarms me with his compassion, but there is a shift. He is done with being late to school for her, or her homework getting more support than his, and he feels the unfairness of it all if she is unwell when he has an activity, sleepover or something planned. He now looks to protect his world from time to time, and that’s okay.

If my boy is a house, only the garden, the fridge and play room lights should be turned on. After bearing the weight of and witness to her needs, all the lights, in all the rooms of the house, are turned on. My darling boy is hyper vigilant, and we’re working on powering him down.

means: How I meet his needs:

He gets time with just me and time with just his Dad. It doesn’t have to be a lot, it just needs to be consistent and close so yep, we have a big couch and get in his bed and bean bag.
I validate how he is feeling about her. “Yep, that’s fucking frustrating”, “Yep, that’s fucking scary”, “Yep, that’s not special needs, that’s just being a crappy sister”.
We have all worked with him, to turn off the lights, to let him know the adults in his life have got this and he can stand down. That was uncomfortable for him.
We recognise his compassion as an above and beyond strength.
We keep him informed. All her appointments and tests have an impact on his life. It was a huge step to realise he was better in the loop, than left with someone.
He packed the hospital bag. He felt good knowing we had what we needed. Plus- he packed treats, really thoughtful crazy fun treats.
When we are at hospital, we always have family dinner. We don’t split the family. It’s more driving and a late night here and there. We have tried it the other way, but it is better for our family to be together. He and his dad bring in delicious take-out, the kids have tv time together and then I take him for a shower and check in on his day.
If she is unwell, we have contingencies so his activities and homework and life keep trucking.
We walk and talk in the bush. Well, we take him bush, and then he takes care of the rest.
We make hay, we make all kinds of hay when the sun shines, the needs are low and we can meet his needs above and beyond.

needs: Hot mess of medical contact details

There are days where I wish I had Blair Waldorf super powers when it comes to managing all the contact details for everyone on Team Ladybird, but in reality, I am more like a Serena VDW hot mess with it. I love Serena but she survives her life rather than thriving in it. When it comes to medical contacts, I don’t need the drama, I need Dorota!

That moment in the GP’s office when she needs to write the referral for the neuro review that is coming up and she asks to confirm the contact details. I am dumpster diving in my bag for an old business card. That moment when the Physio wants to run something by the Ortho and looks to me for the number and I am scrolling for a contact listed as “Good Ortho that looks like Dumbledore”. That moment when you are at school and need to fill out the late camp form and for some reason it requires treating GP details and I am cracking the google vortex. These are just pinpricks. But they are pin pricking me and constantly suggesting I don’t have this shit sorted for my girl and, well, that’s because I was a hot mess with the contacts.

I get that I am letting this matter. I have tried not letting it matter, but having my shit together with medical contacts matters to me. There are a lot of people in our life who need information and I am the nexus for that information. I need them to have what they need so they can help her. The quicker they have it, the more accurate it is, the more likely the document they are producing gets to where it needs to go as quick as I need it to get there. If I focus on the goal – helping her – and they are doing that, then I really should have whatever they need at the ready.

Surely this is simple? The thing is all the details from our medical contacts were gleaned from old school business cards, reporting letters, referral letters with out of date addresses but no phone numbers, faxes but no emails and random health search engines. What I had was Serena’s closet floor the morning after the Constance ball, when what I needed was Blair’s Louboutins; alphabetised, sorted by year and genre. XOXO

means: The easy fix to managing medical contact details.

This is down and dirty; it might not be perfect but it is a results-based solution. I needed to have the contacts at the ready and to feel better about this. I quit expecting myself to get to stellar 5^th Ave office administration and went for a Brooklyn fast fix it.

To minimise wear and tear on my girl, disruption and expense I keep her team at 6. I run it on a night club rotation. If a practitioner suggests she needs a review with someone new, we drop one. One in and One out. No minions. Just the A-list.
I have the awesome secret power of the Kmart kick-ass mini compendium. Get it. You know you want to.
I take business cards. I take lots, more than Chuck Bass gives out. I keep them in my Kmart kick-ass. If someone needs details, I card them.
In the Kmart kick-ass is a note pad (yes! they have cheap refills). I make my notes there.
I photo each card and keep it in a folder in photos. I will not always get around to updating contacts but this I can do while paying the bill.
I always ask for reporting letters, referrals and test requests to be scanned and emailed to me. This is where having a good relationship with your gatekeeper is important.