My ASD Princess

I concluded my last blog One Tough Princess back in January, stating that, One thing we have always encouraged Jenna to do was embrace her difference and own those areas in her life that are unique.

Continuing, not only have we seen an increase in self-learning and questions, but amazingly an openness to help others understand and accept a lovely young lady trying to find a place in a world that doesn’t always make sense.

Our princess continues to amaze us with her unique perspective, not shying away from the tough questions and having her point of view heard. This decision to promote free thinking, voice her opinion and encourage difference has produced much anxiety for me, mainly allowing her access to social media, and posting her thoughts, and frank conversations with medical professionals, schools, and her friends.

I thought I would start this blog by sharing a few of Jenna’s social media posts this year (with permission of course).

Jenna’s photography – Brisbane CBD

Jenna’s photography – Brisbane CBD

So I’m posting this to let everyone know that I’m going to speak about the stuff that I’m afraid to speak about. I’m sorry for all the crap I have done to people that don’t deserve that. I’m sorry if I may not look like I’m listening to you, but I am listening it doesn’t mean I have to make eye contact with you or mean that I can’t fidget while listening, I’m autistic just before I say anything else I’m just going to put this out there

“I’m not blaming my autism for anything I’m proud that I have autism and it doesn’t matter if I do stuff differently that’s okay, nobody is normal if you think your normal maybe you don’t know what the definition of normal and different mean because if everybody was normal life would be real crappy. God made everybody different for a reason in brace your differences”

Ok now going back to where we left off. It is scientifically proven that most people who are autistic do not like to make eye contact with people and some people with autism like to fidget with something in their hands so that they can concentrate better. That’s why I don’t like making eye contact with people and if I don’t have anything in my hand it is going to be hard for me to concentrate on what I’m doing. As some of may know that lately I’ve been not in a good headspace and I don’t know what I’m feeling anymore or what’s causing me to feel so crappy. So I just want to let everyone know that If you ask me what I’m feeling like at the moment just know that I don’t know how/ what to say what I’m feeling.

Posted May 2019

These goals are ambitious and cause anxiety to her parents watching our princess push herself and stretch. We are seeing progress in little chuck sizes that are worth celebrating. Jenna has extended her school attendance by 45mins per day and averaging 4 days per week at school for about 3.5 hours each time. These areas of stretch are amazing, but wear my princess out, and as such we have seen an increase of behaviours and sleepiness and general disengagement at home. However, as in all things with our princess, we labour on the success, the achievement and progress, and apply understanding and grace to the areas of struggle.

Being a parent of a child who is differently able definitely comes with its challenges and quirks, ones that the everyday family probably would either find weird, unacceptable, or wrong. A few, in particular, we have been interesting and a stretch these past few months. A new behaviour that has been a pain point for the family and Jenna’s carers is Jenna’s need to be alone. That may sound quite normal for most of you. However, Jenna has chosen an extremely peculiar place to be alone, the letterbox. Jenna will sit out the front of our home on the letterbox for days upon days, hour upon hours, with no real agenda, idea why or an outcome she wishes to gain, it’s just her place to contemplate and reflect. Weird, out there and at times confusing for her support staff, but it works for her. Another has been the relocation of her sleeping quarters. Never a good sleeper, we have tried everything to assist Jenna to sleep, trying medication, calming time, low lights, no tech, more tech, music, sensory items, animals, toys with nothing proving to last long term or be the magic bullet. So with increased anxiety and low mood, our princess is ‘bed-sharing’ well mattress on the floor anyways in our bedroom. Not an ideal situation, but when you are dealing with a kid who needs sleep and to be close, it leaves little option.

As you can see it has been an exciting time, one that Jenna has stated ‘….. not in a good headspace and I don’t know what I’m feeling anymore or what’s causing me to feel so crappy.’ With a child that needs to be nurtured and held, we look for things leftfield to assist with her feeling ‘okay.’ If that’s a letterbox or a mattress on the floor in our bedroom, that’s okay for now.

For the friends that have deliberately let Jenna into their worlds this year thank you. We appreciate you more than words can express, or we can affectionately show. From sleepovers, shopping dates, a drive in a race car and being a participant at camping events and at church, these small gestures and tokens are huge markers that demonstrate love and show Jenna she is connected and loved,  Thank you.