My ASD Princess

2017 has been hard on our Princess (and us for that matter) to state that Mum & Dad are exhausted is an understatement.

2017 has brought multiple job changes for her parents, lack of stability in regards to her schooling and a delicate balance of all family members making and maintaining friendships within a constant case of chaos. I must be honest that the magic balance of space and community connection has alluded us this year. Our safe hermit space has been our staple. The ‘stay inside and hide’ has been our family motto.

The family dynamic has again been stretched with the realisation that autism is here to stay and her siblings will (and have) grown and matured around her (most noticeable her younger brother) and in some respects leaving her behind academically and socially.

This realisation has brought unwelcomed banter from her siblings and self-loathing and heart-wrenching despair from our princess. Her strong personal and harsh language melt away when her friends are forming stronger friendships and achieving academic awards for their grasp of the English language. Although the push to have Jenna marked at her ability (at an 8-10year old equivalent in most areas) has seen her report cards finally produce pass marks, the older she gets, the more insight is noticed that she is completing different work and has different expectations. The sense of difference overwhelms her every day at school, her push is and has always been sameness. She is starting to realise that this is an impossible and exhausting desire.

This realisation has seen a significant increase in behaviours, anxiety and a more significant fear of the things unknown. Adding complications such as starting a home-based new business (family day care) her oldest siblings completing her studies at school, and in the latter part of the year, myself facing redundancy has just intensified these feelings.

The increased anxiety has meant multiple trips to the emergency department with a comical array of illnesses and ailments ranging from suspected appendicitis, ear infections, stomach aches, alleged broken limbs and others. All these trip have has no avail and equated to no more than antibiotics, rest and an increasing routine of more time at home and absence from school. Increasing still her anxiety has intensified with thoughts of suicide and a return of self-harm and skin picking that hasn’t been seen for over 3 years.

With her Psychiatrist a 10hour round trip (the local won’t see her due to a pre-existing diagnosis of ADHD of which he does not believe in) we were left with no other option than to go on a public waiting list to see a hospital-based paediatrician. The hospital had a greater than 6 months wait for her urgent request from the GP as it was not seen as urgent “on paper” not warranting a shorter appointment. The long wait has been fruitful and assisting in assistance of reduced medication (saving us more than $200 a month) and extremely helpful advice for NDIS (national disability insurance scheme) and preparing to enrol in the scheme in 2018. After several visits, it was agreed to increase her antipsychotic medication (to chiefly address her aggression & hopefully side-effect of anxiety reduction) this had a positive effect within a week or so and we are seeing a more settled princess. Now that her medication has settled we can hopefully start working on other areas that will have a lasting effect. working at treating her boredom, building friends and beginning to explore the community more with positive outcomes (our 2018 resolutions)

Her Psychiatrist has been and continues to be a fantastic asset to Jenna and he has always taken the time to understand her.  This relationship has been invaluable, assisting with referral options, building trust and exploring and experimenting with medications, to ensure she has the best possible supports in place. This constant in her life from a medical perspective has been constant to able to benchmark her progress and also have a professional advocate for her when needed.

Jenna’s language has developed for the worse this year with the F-Bomb becoming the theme of 2017 for our princess. With the inability to understand social cues, an uncomfortable ability to speak her mind whenever and wherever has meant her parents are understandably nervous in the public arena. We have struggled with discipline (a sensitive subject I know) as most of her behaviour is driven by stress an anxiety. We are always trying to balance what is an obvious behaviour and what is driven by a sensory overload or anxiety. I think I get this wrong daily and it is a constant cause of tension with her siblings.

Upon reflection, we have concluded that this year has been the most tumultuous and challenging for our princess and as such for us (for those highly educated, quite shit). We had high hopes for her first year of high school, a timetabled and predictable space, others in her class with similar struggles and specialists that could walk alongside her.

Instead of a promised settled girl we saw a young lady overwhelmed, bullied, isolated and a growing hatred for learning, people and going outside.

A mantra I wrote of several years ago 5 reasons we continue to go outside (click on the link to read more) has been a distant memory and a wish or dream if you will for another time. We have stepped into self-preservation and an afternoon of tantrums, fights and sensory overloads has been too high of a risk. To be honest, we are just tired.

Rather than further rant on the obstacles, times where we wanted to give up and, the scores of exhausting days, settling into a community, moving from a community, changing high schools mid-year, increased anxiety and never before seen frustrations. I want to share our year that was on the wins, the good days and the silver lining.

I don’t know how she does it, each experience that has worn out her parents, each time we explore a new place or try something new. Her recollection is always positive, fun and memorable. If only I could filter the same experiences like her.

To conclude this blog I wanted to highlight some positives which could be written in order to overshadow hopefully our super shit year.

• For the Winter School holiday, we road tripped to see family in the Blue Mountains. Amongst the highlights were camping in -3deg temperatures, the first use of camp toilet (outdoor whole in the wall) meeting new animals and exploring what felt like all the opp shops in within the 2400km round trip.
• Jenna loves slime. We have been blessed that many of her special interests are socially acceptable and at times fashionable (although never to her extreme.) Jenna has taken over our laundry for the sole reason of creating a slime factory. We have gone through 4-5kg of PVA glue and many varieties of activator to find the best consistency of slime. Although her slime addiction has damaged furniture, carpet, clothing and some of Dads electronics (still a sore spot) the silver lining is that Jenna has started taking ownership of her sensory needs. From little things to packing a bag and being ready for the time of anxiety, to researching new techniques we have seen Jenna embrace her autism and not be ashamed of the need to stim and keep her hands busy.
• With insane lows, including behaviours in and out of the home, as stated we have embarrassing encounters when Jenna’s anxiety and executive functioning fail. Her inability to process in times of stress or able to cope with new or unpredictable places we explode. One positive of the latter part of 2017 is Jenna’s awareness of her behaviour, and the embarrassment or early departure caused. Her remorse is incredible, and her manners and gratefulness are just beautiful. Admittedly we have some work teaching Jenna timing and to learn some awareness of when people are upset, we still have ways to go.
• Baby steps and celebrate the smalls wins has been our mantra for many years now. We have started to celebrate one of these wins that Jenna is learning to stay home (albeit for 5-10mins at a time, mostly with siblings) this give mum & dad a chance to walk around the block or just breathe for a moment. This doesn’t come without stressors, notwithstanding the humour, these 5-10mins of peace usually equate to 20-30 SMS messages FaceTime time calls and some swear words that do not belong in a blog post. baby steps we are still winning.
• Jenna’s second high school for 2017 was a small private school. We were blessed to find a teacher that showered praise & encouragement to Jenna. This teacher and widely the school sparked a love of learning and a zeal to try her best. Her teacher encouraged her to stay at school, and for the last 5months of school we went from 20% attendance to 60%. This love for learning and a teacher that saw Jenna’s possibilities was one of the highlights for 2017.
• Jenna has an amazing ability to connect with toddlers, babies and generally people younger than her. With the establishment of a family day care at home, Jenna’s love for children really shone. It was beautiful to watch her passion and ability to connect with younger children, she is gentle, shows empathy and values each one of them each.

So in short 2017 isn’t a year I will remember, and I promise I won’t draw upon it to give me strength and past memories in the future. Honestly, I think all I will remember is I need to sleep more and go outside more than I did during 2017.