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My ASD Princess

A family helping a girl explore her world through the lens of autism

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My Princess, Always Amazing Me

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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).

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

I’ve sure come a long way, I can see I changed a lot over the years. I don’t remember everything about my prep days but I remember my parents telling me stories of when I was in prep. I sure did improve in my social life/skills. I am proud of who I turned into, a young *almost* woman proud of having Autism, ADHD, severe anxiety(well I think so), depression and social anxiety (I wasn’t shocked when I heard I had it) I am proud of what I have and I’m proud of who I am today.

Posted Feb 2019

This kid is full of tenacity, owns who she is, and is fearlessly brave when it comes to her expressive voice.

These past few months since my last blog you can see from Jenna’s post life hasn’t been easy for her, fighting painful thoughts, rejection, misunderstanding, her difference yes being an area to celebrate but also an area of immense pain.

Jenna has set some goals for 2019, and they are big goals;

  • Longer school days
  • Increased school attendance
  • Greater community access

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.

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Featured post

LOVE, My Gift to our Princess.

I have been reflecting on love. Both how my princess shows this and how we ensure she feels and understands love. Like many ASD kids, my princess has trouble showing any affection. As an example, the rarity of hugs is so sparse I only can remember a handful this past 12 months. Once at Christmas time and another before her surgery late last year.

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We don’t look for the ‘l love you dad’ or the big embrace, nor the vocal approval, gestures or small niceties. To be honest, we don’t seek out anything from her. The notion of sameness, predictability, safety is what is sort, and this is what is given. This gesture of love is received, and we see this love in her through reduced anxiety, her huge smile and her ability to adapt and overcome the little things because she knows it’s pleasing to her mum and dad.

The receipt of love is quite simple, its called adjustment, acceptance and seeking out ways that our princess feels safe and protected.

Love is seen again through her engagement and interaction with her siblings. The fighting, F-bomb and distance subsidies and closeness and plays enter the room. The rare and extraordinary occasion is celebrated not with balloons, high fives and cake; but instead, we have a quiet word, huge praise and a well done.

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In our family, love is infrequently verbalised from the children, reserved with their feelings it’s difficult to gauge where they are at and to explore their feelings further. We deliberately express our love loudly to all our kids,  text messages, verbal ‘I love you’ and extravagant hugs. The ‘I love you ….’ is an important routine that is not negotiable. Although rarely reciprocated we want our kids to feel and know they are loved. Even though it may sound forced and at times unwanted or difficult to give, the message is important and even though hard to ascertain, appreciated or at best tolerated.

We have been exploring other ways to express our love for the kids, in particular, our princess. A girl that misses social cues is awkward around others and prefers her company its a rarity to get inside her world or for her to look out.

We have had success recently and although we have not seen many words exchanged we defiantly have seen love exchanged.

I have spoken several times of Jenna’s grandparent’s (my mum and dad), and the deliberate learning curve they journeyed after hearing of Jenna’s autism diagnosis. The questions, study, and willingness to learn has been nothing short of a Godsend for us. We went from feeling we were doing this all on our own to having a family that openly accepted Jenna for who she was and loved her the same regardless.
I thought I’d share some of the little but extraordinary feats they did to demonstrate the love they have for her.

They brought a house 18months ago and had discussions with Jenna about her wishes and what she would like in a house. Jenna’s response was ‘I want my own bedroom.’ A huge ask and a huge imposition that I thought, they will humour the idea but be unable to follow though as the request was vast and impractical.  Mum and Dad set up a bedroom for Jenna shortly after buying the house. The bedroom became her safe place, a place that her dolls live, a change of clothes, etc.; but it was bigger than this to Jenna. This bedroom was her safe place, a place to escape the noise and in turn a place to be noisy. Mum and Dad created an extension of her home with them. They expressed to her she belonged, she was loved.

Mum and Dad let me parent my child, and tolerated the meltdowns, swearwords and extreme behaviours. They loved her by carrying on despite those behaviours, they loved her, made it okay to express herself or be anxious. It didn’t stop there, though, behaviours pass, and Jenna is always quite sheepish afterwards, embarrassed and at time ashamed of the outbursts. Mum and Dad always took the time to understand the why. They also made the time talk to her and help her to work through other ways to express concerns.

It’s an obscure way to show love, but one of my favourite and one Grandad takes much pride in, teaching our princess sarcasm. Again like many ASD kids sarcasm passes her by. Quite often going over her head and leaving her embarrassed and uncomfortable. Dad patiently takes the time to explore the hidden meanings of jokes and even gets her to practice on him her latest script she is learning.

In addition to practising sarcasm, Mum and Dad take the time to listen to her jokes. Bad dad jokes read out of a joke book with no expression and feelings, but funny just the same. They laugh with her, not at her and connect with her at her level. This is a special and dear time that she doesn’t do with any other people.

It’s also the little things that scream ‘I love you’ to Jenna. There is always Zooper Doopers in the freezer. Being a fussy eater, mum and dad have learned her staples of party meat pies & mac and cheese, it’s always to offer, and nothing is too much trouble to cook her a separate meal or allow her to eat after the others have finished.

My favourite expression of love this year is time. Mum and Dad have invested in our princess. They have been there for her, changed plans for her and gave up their house for her. Without this time Jenna wouldn’t now be cutting with a sharp knife, cooking mac & cheese or making herself a drink. Because of this investment we have seen an acceleration of her skill set that we thought were years away (or never coming).

They showed her love by giving her the best gift ever, time.

Thanks, Mum & Dad.

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