My ASD Princess

It’s been a while between drinks (88 days to be exact), but here we go my latest instalment.
After seven days in the hospital, one month at home and numerous medical appointment I’m on the mend. But it’s taken its toll on my princess.

This blog forms an update of the last 90days, a crazy 90 days of learnings, frustrations, healings and for my princess a time of much-needed pushing.

“Ataxia unknown origin” it’s what I was labelled with, what that meant for the family was a dad that couldn’t walk. The father who walked every day went to the shops and the park for ‘timeout’ was housebound. To say my princess was scared and angry at her dad was an understatement.

My health was the families security; my ability to keep running was the lifeblood that kept our families crazy routines intact. It was the security at the end of each day and it was the strength to push when everyone else needed rest.

My ability to endure even the craziest of days enabled Jenna to run as much as she needed, ground herself, rebalance and find her centre. The release she felt from shopping and parks was so satisfying, the anxiety dissipated. It was Daddy daughter time at its best.

I didn’t realise the extent of this ‘extra’ supports until it was impossible to provide. My wife had no chance, no ability to compete and was set up to fail in an impractical, impossible routine.

Parks were special times for our princess, not only did she get her sensory realise, expel stirred up energy, the whole family had time to breathe. Park time was a time where all 6 of us had ‘space’ Jenna and dad time, and the other 4 had a break. This afternoon routine kept balance, brought laughter and always enabled me to smile.

Shopping was painful for Dad; we couldn’t just ‘pop in the buy milk’ we needed to walk every aisle. Meticulously checking for updates of shopkins seasons, touching, smelling, tasting. Every time out was an adventure.  The shops are Jenna’s life, unbeknownst to her, Dad had already checked the crowds, events and best times to shop. What seemed like a spontaneous ‘I’m bored’ fit was organised and set up to a tee.

Shopping was an endless money pit, with unfounded expectations put on Dad. But never the less an enjoyable experience. Again like the park it was an escape from reality, a rush and an adventure. It was fantastic.

Then STOP… It was sudden, without warning, and life was out on hold.

Without the ability to walk, I couldn’t maintain these expected activities, without these activities Jenna couldn’t find balance. Chaos.

During the month of illness, anxiety increased, anger grew and hospital visits made it worse. My baby girl thought her dad was dying and with that the death of the frequently that she had become accustomed. Outdoor play all but ceased.

It was tough times, times that were only possible with the strength of my wife and the flexibility of my dad. Without both, the success of these past months would have been impossible.

My wife was more than able to provide supports for Jenna, although it didn’t meet her need of hanging with her dad. Nothing but having routine established would fix the void.

I’ve always wanted to protect my baby girl; I’m a nurturer at heart. I wanted to be a dad that hides the hard stuff from her, sheltered her from the storm we call life. I hate seeing her in pain; I hate seeing her struggle in what I consider being the norms of this world.

I wanted to hide her from the hard stuff, protect her from the trouble and as much as possible allow her to be my little girl for eternity. Being sick brought to light very quickly that her dad can’t be all things and also can’t shield her from all things, that wrecked me.

Not always the hugest fan of autism giant Temple Grandin I was forced to reflect on several of her quotes. 

I have added these in pictorial form for your reflection.

I wanted to hide her from pushing harder; I wanted to protect her from the ‘cannot’. With doing this, I forgot the ‘could’ and in the art of defending, I lost sight of her potential.

Mainly I wanted to find an alternate to the seemly pressure to succeed, fit in and be the ‘big’ girl that the world desires her to be. These are the learnings that were inspired by my incredible wife and our princess’s exceptional mother during my journey of recovery. In the form of keyword dot points, I have reflected on my learnings.

• Pressure 

My wife has an amazing ability to know when to push. She has been assisting me for the past 20years. As stated above I have been unwell for the past 2 or so months, meaning  I needed to take a backwards step. I hate to be out of the spotlight; my wife rarely has the chance to shine, always hiding behind my loud personality and never ending the drive. I had little choice but to get out of the way, with doing so, magic happened.

During this time, my daughter blossomed, Kathryn with her artful timing knew just when to push and she has an uncanny understanding of what the appropriate pressure was and is and how to apply.

• When to rest

I knew that my need to rest was unquestionable, but upon reflection, this need taught our princess a life lesson that I hope she will treasure for life, rest. I had little choice, but Jen through unintended modelling followed suit. This meant that for moments in time ‘im bored’ diminished and downtime blossomed. Again magic from a wife that oozes patience, success, we have found rest.

• New routine

Routine had to change; from hospital stays an inability to drive and grandad being chief shofar, life has changed. The unwelcomed and unplanned new reality appeared. It was not comfortable and adjustment was the only solution. With the exception of distancing herself from me, the routine was expected and embraced when normality and predictability were kept in motion. Sameness was our saviour throughout the change.

• Work constraints

As stated in previous blogs, maintaining a family of 6, we made choices to both works, bringing in income to maintain lifestyle, pay medical bills and have the occasional family dinner out on the weekend. (if we get the timing, venue and mood correct, which happens very rarely).

As we both move up in management and career development, the flexibility reduces for our princess. Thinking this was always a bad thing I was the king of adaptability, flexibility and predictability. I have been learning that bouts of the reverse have been beneficial and even helpful on our journey of independence, self-reliance and maturity.

Again the genius of illness and the unpredictability of healing and progress meant that our princess had to learn a new skill. This new ability was unwelcomed and at times still told us and others to “F off”, this skill was the coping mentioned above of unpredictability. Although acknowledging that routine, predictability and stability are what ensures a quiet relaxed and in control princess, it seems absurd to wish the reverse. This was our need and upon reflection, our desire and in snippets, pure bliss.

• Saying no

Learning when to say no, similar to pushing was a skill that was in dire need of development. A skill that I still struggle to implement and my soft nature struggles with the concept. There was little choice, with one parent down, routine and commitments still needing to be maintained, something had to give. A healthy dose of relatively and an easily said two letter word was used. We needed to say No. With little success previously it seemed we were about to enter a minefield of meltdown and tantrum, upon reflection another success. Although not a perfect science, we know have the ability to response, for the most part, to wait, not yet, soon and for some part no. Progress.

• Traffic jams

In short out daily commute sux. Adding to the pressure medical appointment, extra commitments at work needed the addition of after-school care. Although not always welcomed, traffic, outside school hours care and various adjustments to timeframes have forced our princess to stretch. Our job has been to communicate our intention effectively, make agreements in advance and apologies at times when we get it wrong.

• Sisters

Wow, this is hard work, they love they hate, they connect they want space. We never get this balance correct but the value is there in investing this relationship and importance to family. It’s been a blessing to watch this develop. I don’t promise that there will always be true harmony at the ‘house of many hopes’ aka home although I am hopefully that love prevails and the good times are etched into their memories for a lifetime.

• Choice and control

How to find the balance, when to admit I got it wrong, when to discipline and when to celebrate. I almost never get this right but we are learning together. An unintended bonus of being sick, was I needed to lose control, in this control being lost my princess has found her ability to choose. It’s been a humbling experience watch her develop. Listen to mum and follow a slightly different set of rules. This past 90 days has made her stronger, more independence and proved to her dad that she is ready to grow. I’m still scared of what is to come but in turn much more confident for success.
It’s been an intense 90days, but I have never been prouder of my family and my princess. Together we can achieve the impossible and it’s okay to push harder at times, that last one is just a reminder for me.

• An update on parks and shopping

We are finding our normal again; I still struggle with walking further than a few hundred metres but the routine is returning. Late night shops, afternoons strolls and 1:1 time is again giving us time to recharge and create space for others in the family.

Oh and Target is once again burning a hole in my credit card.