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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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One Tough Princess

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.

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We Continue to Fight

To say the last 8 weeks has taken a toll would be a huge understatement. As written in my last blog, https://myasdprincess.com/2018/06/02/under-diagnosis-with-half-the-answers/, we are for the first time trying to understand the complexities of the comorbidity of our princesses mental health diagnosis and autism. To add to the complexities it seems that finding a specialist that understands both mental health and autism are a rare breed and one that we haven’t found as yet. So once again we are found educating the professionals, explaining her normal in order to develop a care plan that is complementary and not a hindrance. Since my last update, Jenna has spent 2.5 weeks in a secure ward battling with depression and in urgent need of a medication review.

We are week 5 post-discharge, still experimenting with medication changes, and still with a child that is coming to terms with what seems like her new ‘normal’ that she and we weren’t ready for.

One recommendation was to seek out a family therapist, an idea that if we all as a family could understand her normal and work through strategies together we could once again create a space at home that was safe for her. You would think to find a local therapist in a city of 120,000 people would have been an easy task. 8 weeks of phone calls, recommendations, and referrals have led to zero appointments at this stage. We have a parents therapy session next week, and with any luck, this will be a starting point for us all to verbally address the stress and complexities that is our everyday. With over 30 or so calls already made, and numerous explanations of our unique family dynamic all so-called specialists declined the sessions stating it’s not an area they specialise in. So in desperation, I called a counsellor, not a psychologist, although we still got the same story, unskilled, try someone else, are you sure you want me etc. we have an appointment. Progress, but a situation that in a time of NDIS funding, supposed community understanding and acceptance, we still see that support is still unattainable for the most in need.

The struggle I’ve spoken about often is our response or attitude towards behaviour. With the addition of a psycho-social diagnosis, we have again needed to review behaviour and our response to it. Trying to understand when to respond, how to respond and also the understanding of the ’WHY’ is a taxing and raw reality of our everyday. With the hospital staff stating we need to be firm, consistent and be reactive to inappropriate behaviour and our autism training focusing on reducing sensory overload etc. We are forced into a world with a dichotomy that is hard to fathom and even harder to build a plan that will be successful. Something that I have been an expert so to speak in my profession, has proved to be the most extraordinary battle at home. Our response to behaviour has become the focus of the majority of the day. Whether this is a response to a sensory issue, anxiety, being unwell, poor behaviour, a direct response to others or a response to not being in control, we walk on eggshells constantly risk assessing the situation and looking for ways that could minimise harm.

We definitely don’t have the answers and entering the unknown is really scary, I can only begin to fathom how it must feel for our princess. Living at a constant level of high stress is unhelpful for all parties, but this seems to be the families go to, thus adding to the complexities that we call our everyday. We are exhausted, in a town where we haven’t build natural supports, isolated and perpetually repeating scenarios that I wouldn’t wish on anyone.

But as in all my writing, and public posts, we continue to look for glimpses of hope, a time where there is a connection, times of learning and times that create more possibilities rather than obstacles.

In a time that we all were broken our princess wrote a beautiful post about her recent hospital stay. It’s raw, confronting, but it shows a girl that refuses to give up, and a girl that a screaming out to be seen, accepted and part of a community.

I’m so happy and blessed that I finally got discharged from hospital after 2 weeks almost 2 weeks and a half. I’m starting to feel a bit better from when I admitted to hospital. But all I need to do is one day at a time and I have to remember I have friends and family who love me, care for me and look out for me. I am really blessed that I’m out of hospital hopefully for good but I never know. Thank you so much to everyone who was keeping me in their prays and thoughts it means a lot to me, reminded me that people care and love me and it helped me guide through the tuff times and pain I was going through. It felt like I belonged in this world for the first time in a while and I knew people loved me for who I am. Thank you all so much and I really hope I’m not going back to the hospital because I really hate it there. It was like some people at the hospital thought I was the naughty one and like Was invisible which made me feel uncomfortable, worthless and terrible about myself. But after all the therapy/sessions I did and talking to people even though I felt uncomfortable to talk to them I still did so I could feel better about myself and not wanting to be Suicidal. But I’m still suffering from anxiety and depression which almost always makes me Suicidal. But I try to look on the bright side and say to myself “ I have friends and family who love and care for me .what would they feel when I die or see me get hurt they would be miserable and upset so try to think of what they would feel if I did that”I felt a bit better about myself and I discovered I wasn’t worthless and other stuff. So always remember that if u feel worthless or useless or some other stuff. Remember u are in this world for a reason and your mind or people telling u that .that is not true and always try your hardest to be positive and grateful about yourself or u will keep having that awful thought. thank you so much to everyone who was thinking about me and I am most grateful for the doctors, nurses and my family for everything. Written by Jenna Hope

In the past positivity, brute strength and determination has got us through the toughest of days. So in that spirit, we have refused to hide our princess and continue that methodology of exploration and exposure. As a person this a stupidity and a hiding to nowhere, but as a Dad this is a necessity, it is the hope that little by little the learnings pay off. It’s that raw and extremely taxing determination that I believe will reap tenfold in the future, but the present is hard, really hard.

We are grateful for the support of the NDIS, although still waiting for an outcome of a ‘change in conditions’ review (week 13 and still waiting ) we have been funded for therapy supports and capacity building. Although not how we would prefer to spend funds our princess get between 10-20hours of support per week to respond to her inability to attend school, and honestly enable Mum & Dad to work. With a carer at home (supporting Jenna 1:1), we get 0-2 text or phone calls from Jenna, without a carer we get 20-40 phone calls/text messages. This response to her need for 1:1 supports and inability to self-regulate or actively engage in activities has provided a side effect of quietness and rest.

Kathryn has needed to reduce her hours at work, and our older children and some family members have provided much-needed respite to enable us to continue to work and commitments on extremely short notice.

I’m not a fan of our new normal and to be honest a little pissed at what life is currently. It’s hard, emotionally draining, and gut-wrenchingly raw and focused nearly exclusively on one of our four children. That being said, it’s what we have been dealt, and amongst the crazy, stress and suite of therapy appointments etc. we have glimpses of a wonderful spender, and that’s what we focus on.

2017 has been a tough year

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.

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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.

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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.

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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.

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High School – Unpredictable, Harsh, Damn Hard Work.

 

With a tremendous start to the year, we were on a winning start to our princesses the first year of high school. Everyday attendance, new friends, low anxiety, birthday party success and a zeal for learning. We had seen similar success last year when her primary school finally developed an individual education plan (IEP), and we were confident and expectant of what the year would bring.

We developed an IEP with the high school, excluded her from subjects that have previously cause stress and anxiety (for example, language and sciences.) and started to talk up the possibilities with our princess. This well-intentioned plan was seeing some success, and we saw tremendous growth and zeal for learning for about 7-8weeks.

We hit a wall, a common trend for our princess, a wall that rears its head this time each year. The excitement of ‘a new thing’ had worn out, the unkind words started from her peers, the feeling that people are watching her, looking at her, staring and then her anxiety skyrocketed. I started the predictable next phase of digging, questioning and trying to explore what was going on for her.

Jenna’s anxiety manifests in stomach pains, tears, low mood and generalised unhappiness. These periods of pain quite often end with multiple trips to the doctors and ultimately a visit to the hospital for test and scans. She gets herself so worked up that she loses any ability to communicate rationally and usually regression is seen in all aspects of learning and communication.

We have been in this headspace the past eight weeks. Jenna is tired; her siblings quite frankly want to kill her have had enough, and her parents are in desperate need for some respite and rest.
During these past eight weeks, we have had four doctors appointments, one psychiatric review, one hospital visit, a paediatrician review and eight phycologist appointments across two different practitioners. Each in their own language and expertise trying to assist our Princess in developing a ‘kit bag’ of resources, tools, tricks and education to succeed survive this harsh reality we may call everyday life.

Each appointment we are hopeful that new techniques sticks and philosophy we reinforce at homes are again reinforced during therapy. It seems we are sitting at about 100:1 odds and the investment made seems mostly money thrown down the drain. Regression, seclusion, frustration is becoming the norm and each day moving farther and farther away from her peers.

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Jenna’s artwork about her fidget spinners

Our dreams of independence, a life away from mum and dad, a career, family and lifelong friends seem unattainable, and that’s gut-wrenching, painful and a scary future. Each day I try and push away refusing to accept, and I continue to help her dream, push her farther and again try a new strategy to get through a somewhat typical predictable day.

So our reality currently has been 1-2hours of school attendance per week, that’s right not 1-2days per week but hours. Getting a predictable phone call every day she attends from the office (hearing uncontrollable crying in the background) asking us to pick up Jenna.

The school is at a loss, and us at home having a bored, under stimulated girl that can not handle any social interactions.

We took a bold step this week. As like an IEP, we have developed an individual timetable with the school for Jenna. We have arranged a curriculum that is key learning only (English & Math, with a little cooking) this means that she doesn’t need to enter the school playground, no mainstream classes and no full school assemblies. We have school attendance agreed at four days per week at a maximum of 2.5hours per day. Although a headache and quite a strain on us to organise transportation around work, we are confident that this is a necessary step to ensure some social engagement, some stress and anxiety experienced in a staff place and hopefully stretched scholastically over time.

We can only hope that tomorrow is a better day, that school attendance becomes routine and that I can better understand her anxiety to in turn better support her to growth, be stretched and succeed.

 

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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.

What A Month

January was a tough month in the household.

The family moving in together after six months apart was taxing for all.
Jenna’s three siblings found life difficult to adjust to 24/7 Jenna. In turn, Jenna was far more accustomed to 1:1 time and her space and schedule.

Fireworks, explosive, nasty, vicious, aggressive are just some ways to explain the last four weeks.  Although afternoons as been shared walking in the fresh ocean breezes, lovely evening swims in the bay, and Netflix amidst cold airconditioning, these are just minutes in an incredibly difficult day, weeks and month.

Having the family back has been wonderful for me, and having the four kids and my wife around has brought much excitement and fulfilment; Although it’s been a stretch these past few weeks to extract a positive message from a painfully disastrous day.

The pleasant sea change life that was dreamed off currently looks like a catastrophic disaster and an ill-informed life choice, that in hindsight we would have run from extremely fast.

The ‘we verse them’ mentality in our household (that is autism verse the universe) is at the end stages of the war, and the participants are grumpy, angry and extremely fatigued.

Our castle that we hold so dearly to be the safe place and a place to explore feelings, learning and test out theories and experiments, is far from that. We have bunkered down, and we are in defensive mode and don’t have the strength to push, teach and explore.

The January 2017 My ASD Princess blog is far from joyful and reporting on learnings. We haven’t even been maintaining a constant sameness. There’s sadly been the regression.

We have seen language/speech deterioration, now needed to work with Jenna on her diction, the speed of her speech and to work on not mumbling her words.

We have seen sleep patterns go out of wack and a dramatic increase in her anxiety.

Her physical ailments (common signs of increased anxiety for Jenna) are a daily addition to the comedy that is our lives currently. Her stomach, legs, head and eyes are amongst body parts that are broken this month.

These demands have then increased the need to provide support and care for Jenna, thus increasing the frustration and anger towards her from her siblings.

Moving to a regional city near the beach was the dream, a dream that in the background we have been planning since we were married nearly 18 years ago.

The cost currently does not weigh out the benefit (beach verse unsettled child)

With High School started, no specialist in town to assist with review of her mental health and a child that is defiantly not coping with the vast change in our lives, its not the dream start to 2017.

But we will get through this, we have 16 years of parenting that prove we will somehow get through the other side wiser ( with much less and greyer hair) and healthier. the light at the end is just extremely dim.

To Finish, I thought I move from the negative and outline a few highlights that can be found.

  1. Jenna’s high school is speaking to her about autism and helping her explore what that means for her.
  2. We have natural supports within 10mins from home that frequently help with the kids and when needed us.
  3. Jenna has made a friend at school.
  4. We have joined a local church, as a family and the first youth group event went well for all the four kids.
  5. The beach and long walks although not a frequent or as long as we would like are still a refreshing end to a mostly difficult day.
Featured post

Sea Change

We are bound for a sea change. After four months apart we are finally back together and in one place (with the exception of the oldest who is travelling)

The family has packed its bags and left our city home of the past ten years, looking for a slower paced life in a small coastal town 3 1/2 hours North of Brisbane.

Moving is hard the best of times, but with our princess, a whole level of complexities step in.

Packing bags meant her treasures were unavailable for a time; her TV moved, and this meant it didn’t work as it should and in addition she has been living in two bedrooms for the past 3months. It was a constant state of confusion, misplacement and unrest.

For me, it meant my wife was unavailable, and our tag team approach and respite were not available. It was an exhausting 4 months, 4 months of a child who could not get into a normal routine and a mother and father that were tired, cranky and stressed.

A shout out to my parents though. Without them, the move would be impossible and unbearable. They have made their home Jenna’s safe place and created a space for her. Their love and acceptance have made a tough period bearable. Their tolerance of science experiments, slime, goo and mess nearly everywhere as well as six clothes changes a day have been a true God send. We have broken a table, killed brand new turf and taken over prime time television, with no complaint and true acceptance and affection to our princess. More than their home opening there has been a beautiful bond develop between grandparents and our princess; this in its self-has validated the move and is a major contributing factor to settling by the sea.

I’ve learnt a few things along the way these past four months and I thought I would share a few.

5 pm happy hour

The afternoons indeed suck. We have just learnt to roll with it, accept that evenings are hard and make allowances where possible. I needed to learn where medication may be beneficial, how to give our princess space and when and how to say no. I failed most days, but I fail consistently and after an extended period of learning for us both, for the most, part, afternoons are getting better.

My trail and errors have assisted in preplanning afternoon’s, having predictable periods of the day and where possible no surprises. The last afternoon disaster was due to a forgotten Doctors appointment, whoops my bad.

6 am wake up call

I am torn between letting the princess sleep in or wake her at the desired time. If we wake up just after 6 am, we get ‘I’m bored’, pacing and need to drive extremely slowly to the school drop off area. Conversely if we wake up late. I’m the F’n idiot that forgot to wake her and then we have 1/2 hour of panic but still ready in time for school. I still haven’t worked out what is best for her or me as every morning is stressful, trying and-and effort. I have learnt to give her what I feel is best. i.e. a rough night the night before = sleep in etc. although I’m not loved its helping, I think.

Shopping trips

Thursday afternoons and Saturday morning markets are staples and keep routine and predictability. As you may have read in previous blogs, our princess loves to shop, at any opportunity;  This is a dreaded and quite a stressful event for us as parents but so therapeutic for Jenna. Without this outlet we see an increase in behaviours, moods and withdraw. Again a little pain on our end makes the family slightly more tolerable and bearable. Both by Jenna and for Jenna from her siblings.
We have learnt to give and sacrifice in order to establish family norms and claim. Admittedly more than healthy at times, and we are still working on balance. but currently its working.

New obsessions

I love how quickly obsessions become in and out of fashion. We have had several fadeout this month, and a new one emerge. We embrace Jenna’s  idiosyncrasies and obsessions. These keep her calm, balanced and many times focused on school work and in the car, etc.

We try to keep her safe and educate when needed public spaces, but as a rule, we support her and the public if she needs something to keep her focused and calm.

Apart from having shares in a local glue factory and collecting more shells than most bedrooms can cater for, we embrace.

Getting it wrong & misreading signals

Wow, its been hard reading our princess these past few months.
Hormones are kicking in, new friends, fighting with siblings, being away from family. It’s been an emotional Rolla-coaster for our princess.
And I’m learning that I can always help her out. Times Jenna needs to figure things out herself. She talks through plans with her grandad and also ‘tells’ on me to mum.
Jenna’s is finding it hard to be a girl growing up, getting ready for high school and having to be responsible. I’m still learning to let her get it wrong and then support her afterwards. More importantly, I’m having to admit when I misread the situation or made things worse for her, then wait until she is ready to talk and move in. It’s tough, but been a great period of growth.

Designing the new normal 

The most amazing thing happened last week. We moved to the beach with our princess hating sand and the beach (a phobia of more than three years) stressed as parents on how we were to embrace a new coastal town without going near its most incredible assets were huge.

Out of the blue, Jenna asked to ‘try walking on sand again’ as she wanted to collect shells. This was the beginning of near daily beach walks and tempting her toes to touch the water.
Then her mum worked through a meltdown and anxiety attached while trying to swim. With a tried princess we have a precious family moment with 3kids and mum and dad in the water together, laughing, playing and spending quality time. This is a rarity and was a special moment.

And today we received our princesses report card. Not only did she receive a pass mark for the first time in her schooling, but she was also able to call me and state she had four ‘B’s’ awarded. Finally, we found a school that assessed her on her ability and made her feel valued and smart. This is a good day. She will move into high school next year with a feeling of accomplishment and pride. I couldn’t think of a better way to finish a school year. Once extremely proud dad.

 

Hospital Stay

Very anxious princess tonight++++
Surgery booked for tomorrow afternoon for a -‘COBLATION Tonsillectomy + Grommets +/- Adenoids + Nasendoscopy.’
This is a repeat of the Grommets +/- Adenoids surgery from 4 years ago.

We are hopeful that this will be a turning point for our princess of a reduction of pain, reduction of illness and an increased appetite.

Mum and Dad aren’t holding up to well either.

If you are of the praying persuasion, this is welcomed. We also take well wishes, thoughts and virtual hugs. 

Not overly exclusive just want to feel the love 😜

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