As I write this, I am in a coffee shop, Jenna is hanging out with a friend in a shopping centre unsupervised. We’ve come along way! Yes, dad is still needed as a backup, a ‘just in case’, but she, today is able to connect with a friend independently and be seen and interact as every other nearly 14year old girl wants.
This is a first for our princess and hopefully a glimpse of what can be in the weeks and months ahead. That doesn’t mean she’s not anxious, or that she even slept through the night last night, up and down worried about the what if’s, but we made it.
A thirteen-year-old girl shouldn’t hurt and be so overcome by fear just at thought of going outside. It breaks my heart, and you’re constantly torn between keeping her dry and safe and venturing outside to the unknown.
This past year we had planned periods of hibernation, approximately 6-7months 2018 and then a period of bravery (including times pure stupidity) where love and determination overcome the tiredness and we push for new experience and opportunities.
We’ve learnt that the 5mins of sheer delight, always outweighs the pre-planning, panic attacks and overstimulation. Reflecting on the end goal, prize and the simplicity of a ‘thank you’ or ‘that was fun dad,’ makes the journey and life lessons always worthwhile.
Either luring her outside with her ability to connect with younger children, Kmart, McDonalds or bush walks under duress we ensure that although anxiety has a hold, when possible it has no stranglehold. Her tenacity and willingness to in her words ‘survive’ for the main is our only sustenance, and pause in what has become far from what others consider normal but for us, routine.
I thought I understood anxiety, depression and for that matter autism, but this past year has given me a new understanding of our princesses fight.
It’s hard to see the progress through the storm, fights, storytelling to professionals and daily hurdles, however when we do get to pause you see the little things and smile.
I’ve been learning not to focus on the 30 hours of school she doesn’t attend per week or the endless juggling of multiple allied health or medical appointments. Even further the constant seesaw of medication changes, self-harm, overstimulation, fighting and misunderstanding.
If this becomes our focus and measuring
p stick, I would feel defeated and fighting a lost battle. Instead, I’ve been determined to notice these huge milestones these past months that demonstrates a positive movement forward;
Self-regulation is improving
We have been focused these past six months on building a ‘kitbag’ ‘toolkits’. One of the blessings of the NDIS is we have received funding for equipment. With the help of a team of specialists and trail and error we built toolkits of slime, putty, fidget toys, technology, art supplies. With these tools, we have supplies in each car, at home, her bedroom and school. With discussion, planning and teaching we have now the resources to allow Jenna to calm, focus and play in a way that works for her.
Another example upon reflection that took me by surprise was Jenna’s recent ability to remove herself from stressful situations. Meaning we are seeing fewer meltdowns and hours of readjustment. This seemly simple act, as an example of removing herself from an overpopulated pool, means she can experience and connect but disengage when it becomes too much.
Planning for her future
Seems simple and logical, but a new world has started where we are dreaming and planning further than tomorrow. Career goals, little goals of extending school attendance, making a friend. I can’t say her self-worth has improved or the uncomfortable thoughts of harm and dread, but again we see glimpses of light emerge when we talk about the possibilities and what if’s.
Taking more control
We have seen an ownership and a preview of independence that only a few months ago, we thought only a dream. It’s the little things;
13 years of not able to clean her bedroom, to wanting to put clothes away.
Taking ownership of her sensory issues around food and learning to cook simple meals (noodles, mac & cheese, sandwiches.) Mum and Dad would like fruit abs veg added, but we are eating, planning and making decisions, progress.
Pushing herself to do what best and better in her eyes.
Looking for alternatives, when the chosen are impossible, for example waiting for movies to come on DVD rather than being uncomfortable at the cinema, and being okay with that.
Wants to be her best
Again baby-steps but we are seeing a driven young girl that wants to do better. Learning where it safe to push, and where she is not ready.
Notable successes to close
As I wrote at the start, I said we had times of hibernation. We have seen some markable progress when your benchmark was the front driveway, these are amazing.
We ventured out and had three separate successful visits with her Cousin.
After a considerable break, we are back attending church regularly and connecting with younger families and school friends.
In conclusion and my personal favourite, teaching those older than her about anxiety & autism. One thing we have always encouraged Jenna to do was embrace her difference and own those areas in her life that are unique. Not only have we seen an increase in self-learning and questions, but amazingly an openness to help others understand and accept a truly beautiful young lady trying to find a place in a world that doesn’t always make sense.