I’ve learned a new word, and I don’t like it, Comorbidity. While I thought this was to mean for our princess that her anxiety, sensory processing and to some extent her ADHD were concomitant with her Autism, that is naturally accompanying. I’ve unfortunately been misinformed and for her underdiagnosed. We now understand that our princess comorbidities are concurrent, which we are finding is far more complicated than we ever imagined. That is her conditions exist simultaneously but independently with another condition. That being that for Jenna anxiety, depression, sensory processing, and ADHD are present with and in the main separately individually present as a stand-alone disability.
This, in turn, brings me to another new word I’ve needed to learn to petition for additional support for her. Psychosocial, A Psychosocial disability is a phrase that describes a disability that can derive from a mental health condition or episode. In simple terms meaning limitations in how a person thinks, feels and interacts with others. Therefore causing them to have barriers or stopping them from fully participating in activities of daily life. Thus meaning that I now need to advocate for supports not only for her autism (supports we are grateful for but currently not meeting her needs) but her psychosocial disability ( that is her anxiety, social phobia, and depression).
Its been a hard few weeks months, we can’t seem to find the right balance. Always jumping from boredom, school attendance, therapy sessions, doctors appointments, mini breaks with family, time with us, time alone, repeat. We have lost the rhythm that our princess needs to provide her balance and calm. Last week I had a daughter with autism (level 2) this week I have a daughter with a suite of disabilities that are fighting for a front row seat, in her every day. A child that I thought saw the world through the single lens of autism, now viewing life through a multiple lenses mixing anxieties, depression, and social phobias blurring her reality and messing with what we thought was her normal.
So I am hurting because my daughter hurts, but I’m also angry because my daughter hurts. When your daughter has only been giving half the diagnosis, it means we’ve just been treating a symptom, not the cause. Instead of secondary diagnosis, we are now dealing with multiple primary disabilities. I’m saying that the focus has been on autism, how autism affects the day to day, how autism affects school, living in the community, interacting with her siblings, with me. 3.5years of therapy, a psychologist, working on resilience, feelings, expressive language, independence, and school attendance.
Treatment was focused on treating the primary disorder, not the secondary ones; we thought we had time to develop social skills down the track, for now, have a toolkit to ensure you reduce the effects (noise, crowds, routine). We thought to establish a routine, building tools, and equipment to help balance her surroundings was the focus. Only now to be corrected by mental health professionals that we are letting a 13-year-old girl rule us and she doesn’t need these ‘tools’ she needs things to be the same as everyone else, she needs ‘normalization.’ In the effort to keep a calm house, a calm daughter and for her other three siblings to have a somewhat ‘normal’ childhood we worked at soothing our princess and helping her to remain level and calm and focusing on autism-related programs.
After 3.5years of focusing and practicing a theory, we are now starting again, and to be honest we are remarkably lost and outside our comfort zone. The first shift has been the element of risk. Transitioning exceptionally quickly from the promotion of independence to the removal of to keep our princess safe. This focus messes with your head and challenges your every being. Bringing the focus on risk and harm minimization, means for the time being our house is locked down. No sharps, no medication and a rethink of what is stored and easily assessable.
That means for now our focus is on her depression, social phobias, and anxiety. Unfortunately, for now, it also seems that we are in a system that only understands elements of her disability, forcing us to explore multiple treatments and therapy to ensure all needs are being met.
What we are sure of over the past 3.5years is our princess is a fighter and determined to leave her mark well and truly in this world. Our job as parents is to enable her to dream, help her to see there is a purpose for her and equip her with the tools she needs to succeed. Most of all, at the moment we need to show her inexcusable, unashamedly and boundless love
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.
2016 marks the last year of primary school for Jenna. It was hoped that this would be a year to fully prepare for high school. The concept was, we would introduce her to multiple teachers, larger lesson sizes and a variety of different peer groups. We had planned that the introduction to a vast array of classes, more complex timetables and different teachers (specialist) i.e. Language, music and the arts would be a fantastic platform to high school life.
Academically this was a huge win for Jenna, she was progressing well and for the first time in her schooling journey received a pass mark for the majority of core subjects (English, Science, Math.)
Although, to our regret the cost of academia was a reduction in school based supports; this was disastrous for our princess. The progress of the first semester was lost, the wins on her report card forgotten, but more disastrously the want to engage and even attend school had been forfeited.
It took a stint of illness, poor school attendance and a dramatic increase in behaviours for us to ask more questions to the school. By the time we understood the changes that occurred at school (i.e. reduction of support hours, 1:1 teacher aide support etc.), it was too late. Damage already was done, and the trust of the system and teachers had been lost by our princess.
It was again time for a change and to try a different angle.
This lead us to school number two, and soon to be three schools in 2016 for our princess.
Each one had promise:
School one was close to work.
School two was close to home.
School three is in the new community we are moving to next year.
All three schools have advantages, and all gave a promise of better engagement, better friendships, no bullying and improvements in her academic achievements.
Our second school said all the right words, made all the right promises and had a bonus. It was 3 km from home and Jenna’s younger brother attended the school.
Isaac was a huge benefit; he became her protector, the bus monitor and a watchful eye. It’s amazing how much support an eight-year-old boy could be; we were super proud of him, and this made the first few weeks effortless for Jen.
The help of the younger brother, although a chore for him and embarrassment for her was beautiful. It assisted with Jenna’s anxiety levels and meant she didn’t need to worry about ‘big’ things, things like catching a bus home. This simple act brought back again her disability and struggles with simple tasks that everyone takes for granted.
This second school did not have the capacity to cater for the complexity of her needs. Social anxiety, making friends and maintaining grades made impossible due to their limitations. The school had a huge heart, excellent teaching staff, and beautiful ideals. The dream didn’t last; Jenna made friends with the teachers, not the students. Bullying occurred and continued from day one. The hope of finding a perfect fit and a place that was able to accommodate quickly faded. Again we turned to weeks of illness, a return to non-school attendance, and the search again started. School number 3.
Over the past six years, our focus has been mainstream schooling, normalisation and a sense of sameness for our princess. Pushing with everything we had to offer her the ‘same’ education and experiences as her three siblings. We fought, argued and when needed disagreed with the education department for her needs to be met. We discussed the stigma of ‘the naughty kid’ ‘misfit’ ‘trouble maker.’ We wanted the best, and the best in our eyes was the ‘same.’ We continued to make adjustments, exclusions and exceptions in order to keep the elusive dream alive, a normal education.
These past six weeks I have needed to acknowledge again that her disability has limitations, that it takes a team of professionals to educate her, and she will never ‘fit in’ with the crowd or hit those elusive benchmarks that every parent awaits. I needed to grieve again for what of could have been and continue to ask the same questions that I kept avoiding.
What does the future hold?
What will her normal be?
What’s best for her?
I’ve come to the realisation that I needed her to be valued for her ability, individually and interdependently. She did not need to be benchmarked against other students, already established milestones or community expectations, etc. I needed to benchmark her on her capabilities, goals and desires. There needed to be an individual approach, one that was developed for Jen, and her alone.
Two weeks ago I was posed with a question, mainstream schooling verse attending the special education unit (SEP.) I chose the SEP; I selected a stream of education that will focus on life skills, core competencies and relationship building. We have a new plan, a plan to overcome anxiety, to daily learn new skills, to slowly feel comfortable in the community and to make lifelong friends. We have a new path, a new direction and a future that again looks promising and exciting for our princess.
But still I am learning to step back when needed and push/advocate for better. Never being satisfied with expected norms, always dreaming for better, always being challenged to allow her to fail, learn and try.
It’s lifelong learning, and each day is an adventure, an adventure of the possibilities that await our princess.
And we celebrate little wins daily : learning to cook Mac and cheese, scrambled eggs and cheese and bacon pastry puffs, just a few wins this month.
New fascinations: slime, drawings, printing, birthdays (and numbers in general.)
Its always an adventure, and always exhausting, but so worth the ride.
It’s been a while between drinks (88 days to be exact), but here we go my latest instalment.
After seven days in the hospital, one month at home and numerous medical appointment I’m on the mend. But it’s taken its toll on my princess.
This blog forms an update of the last 90days, a crazy 90 days of learnings, frustrations, healings and for my princess a time of much-needed pushing.
“Ataxia unknown origin” it’s what I was labelled with, what that meant for the family was a dad that couldn’t walk. The father who walked every day went to the shops and the park for ‘timeout’ was housebound. To say my princess was scared and angry at her dad was an understatement.
My health was the families security; my ability to keep running was the lifeblood that kept our families crazy routines intact. It was the security at the end of each day and it was the strength to push when everyone else needed rest.
My ability to endure even the craziest of days enabled Jenna to run as much as she needed, ground herself, rebalance and find her centre. The release she felt from shopping and parks was so satisfying, the anxiety dissipated. It was Daddy daughter time at its best.
I didn’t realise the extent of this ‘extra’ supports until it was impossible to provide. My wife had no chance, no ability to compete and was set up to fail in an impractical, impossible routine.
Parks were special times for our princess, not only did she get her sensory realise, expel stirred up energy, the whole family had time to breathe. Park time was a time where all 6 of us had ‘space’ Jenna and dad time, and the other 4 had a break. This afternoon routine kept balance, brought laughter and always enabled me to smile.
Shopping was painful for Dad; we couldn’t just ‘pop in the buy milk’ we needed to walk every aisle. Meticulously checking for updates of shopkins seasons, touching, smelling, tasting. Every time out was an adventure. The shops are Jenna’s life, unbeknownst to her, Dad had already checked the crowds, events and best times to shop. What seemed like a spontaneous ‘I’m bored’ fit was organised and set up to a tee.
Shopping was an endless money pit, with unfounded expectations put on Dad. But never the less an enjoyable experience. Again like the park it was an escape from reality, a rush and an adventure. It was fantastic.
Then STOP… It was sudden, without warning, and life was out on hold.
Without the ability to walk, I couldn’t maintain these expected activities, without these activities Jenna couldn’t find balance. Chaos.
During the month of illness, anxiety increased, anger grew and hospital visits made it worse. My baby girl thought her dad was dying and with that the death of the frequently that she had become accustomed. Outdoor play all but ceased.
It was tough times, times that were only possible with the strength of my wife and the flexibility of my dad. Without both, the success of these past months would have been impossible.
My wife was more than able to provide supports for Jenna, although it didn’t meet her need of hanging with her dad. Nothing but having routine established would fix the void.
I’ve always wanted to protect my baby girl; I’m a nurturer at heart. I wanted to be a dad that hides the hard stuff from her, sheltered her from the storm we call life. I hate seeing her in pain; I hate seeing her struggle in what I consider being the norms of this world.
I wanted to hide her from the hard stuff, protect her from the trouble and as much as possible allow her to be my little girl for eternity. Being sick brought to light very quickly that her dad can’t be all things and also can’t shield her from all things, that wrecked me.
Not always the hugest fan of autism giant Temple Grandin I was forced to reflect on several of her quotes.
I have added these in pictorial form for your reflection.
I wanted to hide her from pushing harder; I wanted to protect her from the ‘cannot’. With doing this, I forgot the ‘could’ and in the art of defending, I lost sight of her potential.
Mainly I wanted to find an alternate to the seemly pressure to succeed, fit in and be the ‘big’ girl that the world desires her to be. These are the learnings that were inspired by my incredible wife and our princess’s exceptional mother during my journey of recovery. In the form of keyword dot points, I have reflected on my learnings.
My wife has an amazing ability to know when to push. She has been assisting me for the past 20years. As stated above I have been unwell for the past 2 or so months, meaning I needed to take a backwards step. I hate to be out of the spotlight; my wife rarely has the chance to shine, always hiding behind my loud personality and never ending the drive. I had little choice but to get out of the way, with doing so, magic happened.
During this time, my daughter blossomed, Kathryn with her artful timing knew just when to push and she has an uncanny understanding of what the appropriate pressure was and is and how to apply.
When to rest
I knew that my need to rest was unquestionable, but upon reflection, this need taught our princess a life lesson that I hope she will treasure for life, rest. I had little choice, but Jen through unintended modelling followed suit. This meant that for moments in time ‘im bored’ diminished and downtime blossomed. Again magic from a wife that oozes patience, success, we have found rest.
Routine had to change; from hospital stays an inability to drive and grandad being chief shofar, life has changed. The unwelcomed and unplanned new reality appeared. It was not comfortable and adjustment was the only solution. With the exception of distancing herself from me, the routine was expected and embraced when normality and predictability were kept in motion. Sameness was our saviour throughout the change.
As stated in previous blogs, maintaining a family of 6, we made choices to both works, bringing in income to maintain lifestyle, pay medical bills and have the occasional family dinner out on the weekend. (if we get the timing, venue and mood correct, which happens very rarely).
As we both move up in management and career development, the flexibility reduces for our princess. Thinking this was always a bad thing I was the king of adaptability, flexibility and predictability. I have been learning that bouts of the reverse have been beneficial and even helpful on our journey of independence, self-reliance and maturity.
Again the genius of illness and the unpredictability of healing and progress meant that our princess had to learn a new skill. This new ability was unwelcomed and at times still told us and others to “F off”, this skill was the coping mentioned above of unpredictability. Although acknowledging that routine, predictability and stability are what ensures a quiet relaxed and in control princess, it seems absurd to wish the reverse. This was our need and upon reflection, our desire and in snippets, pure bliss.
Learning when to say no, similar to pushing was a skill that was in dire need of development. A skill that I still struggle to implement and my soft nature struggles with the concept. There was little choice, with one parent down, routine and commitments still needing to be maintained, something had to give. A healthy dose of relatively and an easily said two letter word was used. We needed to say No. With little success previously it seemed we were about to enter a minefield of meltdown and tantrum, upon reflection another success. Although not a perfect science, we know have the ability to response, for the most part, to wait, not yet, soon and for some part no. Progress.
In short out daily commute sux. Adding to the pressure medical appointment, extra commitments at work needed the addition of after-school care. Although not always welcomed, traffic, outside school hours care and various adjustments to timeframes have forced our princess to stretch. Our job has been to communicate our intention effectively, make agreements in advance and apologies at times when we get it wrong.
Wow, this is hard work, they love they hate, they connect they want space. We never get this balance correct but the value is there in investing this relationship and importance to family. It’s been a blessing to watch this develop. I don’t promise that there will always be true harmony at the ‘house of many hopes’ aka home although I am hopefully that love prevails and the good times are etched into their memories for a lifetime.
Choice and control
How to find the balance, when to admit I got it wrong, when to discipline and when to celebrate. I almost never get this right but we are learning together. An unintended bonus of being sick, was I needed to lose control, in this control being lost my princess has found her ability to choose. It’s been a humbling experience watch her develop. Listen to mum and follow a slightly different set of rules. This past 90 days has made her stronger, more independence and proved to her dad that she is ready to grow. I’m still scared of what is to come but in turn much more confident for success.
It’s been an intense 90days, but I have never been prouder of my family and my princess. Together we can achieve the impossible and it’s okay to push harder at times, that last one is just a reminder for me.
An update on parks and shopping
We are finding our normal again; I still struggle with walking further than a few hundred metres but the routine is returning. Late night shops, afternoons strolls and 1:1 time is again giving us time to recharge and create space for others in the family.
Oh and Target is once again burning a hole in my credit card.
We learnt some hard life lessons these past seven days.
Brushing my teeth feels gross but if I don’t I lose them.
Misjudge somersaults in the pool messes with your head (literally).
Friends don’t stay friends forever when your ten years old.
Weight gain is hard when you’re a girl.
Having house rules are helpful and painful at the same time.
Sport always sucks when you’re not the boss
But…. We got through it all, both of us are stronger and we have good strategies that will help us out far beyond these seven days.
Specialists, school teachers, family and new friends have brought a sense of calm and normality to our princess’ life finally finding momentum and a steady groove.
Since moving house, our princess is sleeping in her room at the right time every night. Mum and dad get their lounge room back and Jenna has a dedicated space to ‘chill’.
Bring on the holiday break and heaps of crazy fun as a family
We often get asked why we continue to head out to dinner, festivals, events, cinema, and events where large amounts of people are. We get… “Why do you guys put yourself through this?” “Is it fair to get Jenna so upset? “Don’t you get embarrassed?” , “what about other people around you?” , “Shouldn’t you stick to McDonald’s?”
To tell you the truth we ask ourselves similar questions too. It’s tiring, the other 3 kids get very overwhelmed and at times its very expensive. If you don’t get the prep right, potential behaviors. If you get the social story wrong, potential behaviors. If the event isn’t how Jenna expected, potential behaviors. But still we head out most weekend and look for new opportunities, fun and family experiences.
So tonight I thought I’d share the top 5 reason we have intently decided to go outside.
I work in the disability sector and the heartbreaking stories I get told frequently about individuals never experiencing a holiday, going to the movies or going out to dinner breaks my heart. I want Jenna to have the same greater opportunity and experiences than I was afforded (and I had plenty). We keep looking for a peek experience that resonates for her. We get it wrong more than right but we keep getting back on the horse so to speak, again, again and again.
Normalization (both for us and our princess)
Similar to above, but so important. I want Jenna to first be a kid that lives in the big city. We need to feel “normal” and feel like a family that does “normal” things too. When life get tough we go indoors and lock ourselves away. Its easier that way. We are private people and get our recharge at home (nice wine, movie on our large couch). Its often a hard choice but we deliberately choose to go outside and do “normal” everyday family activities. This point is by far the most important for our other 3 kids, often feeling ripped off!, we go out for them.
Jenna can learn appropriate social behaviors
Our princess goes to intensive therapy multiple times per month to learn how to behave socially. So we go out and practice. It’s hit and miss, but a valuable safe testing zone for Jenna (because we are with her). We are constantly scaffolding for Jenna, breaking down tasks and explaining expected norms. All this training needs to be tested, rather than setting safe easy places we just hit the town and for the most part we “see what happens”
Others can be blessed by her nature and kindness
A secondary benefit is that other people see Jenna’s heart. Whether it is asking to pat a dog, introduce herself to a family with a 2 year old or just see her dance and be happy. Her excitement if infectious. These are the times that autism is a distant second to a caring young 10 year old girl.
Educate others about autism
When the crap hits the fan, we choose to educate rather than to get embarrassed. This choice really sucks, because its not about embarrassing the ignorant or shouting at the arrogant. We choose to take the time to explain the reasons for her behaviors. We take ownership, apologize and then we try to educate.
I have listed the top 5, but this is not why we do what we do everyday.
Truthfully we have fun, our philosophy is to remember the highs and try and forget the lows. This choice makes every time we go outside a memorable day in a fantastically good way.
It seems we have pressed re-wind, 1 year ago to the week we were searching for a new school, new psychologist, different friends and came anxiety.
Trying to find ‘the best fit’ for our princess seems to be a never-ending journey.
Trying to understand ‘triggers’ and unpack the stressors is tirelessly painstaking.
Learning that at times unwelcome behaviours from Jenna communicate deeper worry, fear and barriers that inhibit her to tap her full potential.
Mum and Dad figuratively ‘hit the wall’ and run out of the fight. We needed to find a left field solution to provide respite, solace for Jenna. We needed both a quick win and a long term solution.
During our psychologist appointments, we have been encouraged to look for triggers, ask the questions, look for answers. This exercise provided more questions than solutions, instead of finding a single cause for the behaviour/anxiety it just created greater confusion.
Still we kept digging, looking for answers, adjusting routine, modifying commitments. Nothing.
Next became a bigger problem… the constant in Jenna’s life the past 6 years has been a school. School, for the most part, has been predictable, structured and problem free. In what seemed overnight we went from going to school daily, to non-attendance. We made it 3 days this month and I started asking Jenna questions and digging a little. We knew some of the problems. Simple, easy to understand, although near impossible to fix for an ASD kids with limited understanding of social norms and a life outside of herself. I explained all the little concerns away, pushing away as Jenna’s idiosyncrasies and seeking comfort that the school system knows best.
I still had an issue that wasn’t fixed, School wasn’t working for Jenna. No attendance and wanting to be at home with Dad couldn’t work long term. I needed to go to work, I had to pay the bills, We needed a solution.
Grandparents saved the day, what was meant to be an overnight stay turned into a 2-week visit. Jenna was spoilt, made to feel special, was given time, and valued. Anxiety reduced, normality started to return, and our bright, bubbly girl was returning.
I starting digging again, now in a better headspace we begin making progress. It was a simple problem with huge ramifications.
The problem was the rules, different rules. We had several classes at school with conflicting rules, relationship’s and expectations. It was to cause so much confusion and anxiety that my princess was physically sick.
We concluded that this was broken, a problem that was small, but too big to solve for Jenna.
Jenna had moved on… She found the problem, although the simple fix was too hard to execute. As started at the beginning of the blog, it was new school time.
Big girl choices were made. And a new journey starts next week for the princess.
To say “Its been a tough holiday period for the princess” would be an understatement.The normality of school, bedtime, packed lunches and her gymnastic lessons create a rhythmic stability for her, and we were free from this for the next 9 days. Added to the messed up routine, we explored new places, holidayed with friends and shared many long car trips together.
There were many many highlights, laughs and memories, but wow I was holidayed out.
But to some extent its been tougher on my 3 other superhero’s. We have been teaching Jenna’s 3 siblings about tolerance, to walk away from conflict, and to be brave. Sharing with them that they are loved, important and are worthy of “Dad/Mum” time. Although these simple lesson have been taught, the application has been proving difficult, and with good reason.
At face value all our kids understand they are loved, special and are bound for exceptional things. But constant aggression, harsh words and at times violence will cause the strongest to break.
I think it all came to ahead last weekend when my 7 year old son thought I “hated him.” My heart broke, had I been too tough, did I expect too much, had I set the poor fella up to fail?
Without coming to a conclusion, I hugged him hard, gave him a kiss and just “hung around” for a while.
Man I love him heaps. I love all of them heaps, and getting the balance right it just plain hard work. That small gesture given to my son cost me heaps. I paid for that gesture for the remaining 5 days from the princess. The tables were turned, respite for the kids, pure anger for Dad.
Kathryn and I try and take most of the heat, divert the pain so to speak. We look for avenues to keep Jenna busy, assure she has had 1:1 time, look for ways to address sensory needs and work inline with special interests. We have been finding that although this is proving invaluable for Jenna, the cost at times is high for the other 3.
We often hear comment about our decision to have 4 children (yes it was a choice). We are reminded about the cost, the pressure to meet all their needs, the competition, not being able to “keep up with the Jones”. We don’t over think this. All our children are loved, have value, have responsibilities and will achieve (with much help at times) their wildest dreams. They play AFL, piano, in theatre and a gymnist (well this month anyways.) I wouldn’t have it any other way.
Often at night I ponder what will become for my princess and 3 superhero’s. I wonder what steps we will get wrong and which ones are right. I pray for all my kids, although I don’t think I pray very grand/over the top prayers. I don’t wish for greatness, wealth or riches.
Not that my faith can’t believe for this but what I want is different. I pray for things like; fun, freedom, free expression, choice, friends, to continue to feel comfortable being them, to embrace their uniqueness and to always be silly sometimes.
So life is a little crazy sometimes always, the bills are always a little late, I may drink too much wine, I may make most of my parenting up on the fly, but God i’m grateful for my family and wouldn’t have it any other way.
It’s been a tough few weeks, admittedly we were expecting this moving into more active therapy season and meeting new people; but it sucks all the same. My princess is tired, anxious, and generally fearful which in turn affects her sleep patterns and relationship at home. Mum and Dad understand this and gives ‘the princess’ the space she needs and home life on the most part is safe and okay. It’s accessing the community that has been a struggle. We get both extreme’s, Jenna want’s to explore Kmart’s toy section and local parks but beyond this its very painful for us to venture out. This is proving to be a difficult task with 3 other children with their own interests and schedules but we always find a way and solider on. When given the time to be alone, run and play the next few hours are fantastic so we have adopted a model of support for Jenna to assist to ‘recharge her batteries’ so to speak. We have personally become acquainted to every park in a 5km radius from home (we know every jungle gym, swing set, spiders web and how to get there multiple ways). Although my princess is unable to articulate which park to go to, we eventually make it to her chosen destination and the unwind begins. Dad has learnt some cues to assist with finding the right park (we have been known to go to 6 parks in a row until the find the perfect one). I look out for grunting sounds, frowns, smiles, the amount of people at the park and presently does it have bars to swing on. Scaffolding although a great help most of the time for us doesn’t work here, I can’t seem to find the correct words to assist Jenna precisely express what she needs. The parks help although we are still experiencing at times very violent meltdowns, sickness, numerous fights with siblings, and an inability to explain what’s happening to her. We still are having difficulty with very public outbursts when we are needing to end an activity. As most kids with ASD routine is very important to Jenna. We are learning that it’s not the routine that we established that is gospel. It’s the routine that Jenna has understood, this has been a hard lesson to learn. Although a tough time has been had by all we have learnt that this is part of what we need to do as parents and as a family. We need to constantly teach our other children to work through the problems of the day, meltdowns and harsh words, explaining that at times this is Jenna. It’s Jenna not because she is a rude girl, she doesn’t really hate you and mostly she really cares about you. We have bad days because we have trouble understanding what Jenna is trying to say to us. It’s easy to teach, discipline and model the correct and expected behavior for our own family. Although we have been really taken a hit this past few weeks from others (mostly complete strangers.) We can teach others, work on models of support to reduce behaviors, but I am coming to the realization that some people I meet have the wrong idea or end point for these tools. These tools aren’t to make my life easier, they aren’t even there to help the school system or the local supermarket. We invest our time and money to see our Jenna reach her potential. We work damn hard to up-skill her so she can succeed, make friends and have the life she chooses. These tools are for her. We are working with tools, strategies and various therapist to give my princess a chance in this harsh world. A world that doesn’t seem to understand and for the most part want to educate themselves. I am finding that the adage that ignorance is bliss fits well. I am the person that usually takes it all in my stride, keeps on keeping on, etc. but…… As I already stated, we have had a rough few weeks with our princess. So with this in mind please allow me a little licence to vent my frustration…………..
Yes it’s hard
Yes I get embarrassed
Yes, I wish I could go on more family outings.
Yes, I feel for my 3 “neurotypical” children sometimes
Yes, I want to chastise my other 3 children sometimes
Yes, I love her to bits and will fight anyone that wishes to limit her
Yes I hate you looking at me in horror and at her in disgust
Yes I know she is making a loud noise and disrupting you
Yes it’s okay for my 10-year-old to play with “little kids” toys and equipment
We have recently spent the weekend away, the world wasn’t overly kind to us so I thought I would “apologize” to some of the looks, comments, and arrogance we experienced over the weekend.
I’m sorry that I brought her out in public
I could lock her away if you prefer but I for one think she adds life and zeal wherever she goes. She lights up my world and if given a change she could do yours. Please stop for a second and realize that she is NOT different, naughty, or a nuisance. She is a 10-year-old beautiful girl finding her place in this world.
I’m sorry that it’s important for us to expand her capabilities
Yes, I will continue to go out for dinner, explore the unknown and try new things. This will cause all parties pain, often, but every now and then….. eureka we struck gold and a new place we can venture is found.
I’m sorry that you don’t understand or want to understand autism
If you asked me I would take the time, stop and explain the complexities of ASD, ADHD and anxiety. The dirty looks, shaking heads, stares and laughter don’t help. They make my daughter more anxious, it makes her feel naughty and bad. It makes the hard work invested feel worthless and as for her parents self esteem, well….
I’m sorry that I break the rules sometimes to meet a sensory need
Yes I break the rules!! I manage risk, and ask myself, do I need to follow the social norm and some printed rules. Yes this is intentional, No I don’t need you to remind me I’m doing it. Again I am happy to explain autism to you.
I’m sorry that your needs are more important than her’s
My whole existence is to ensure my families success, at times that will mean that my princess makes too much noise in public, she will be inappropriate. More often than not I will get it wrong and make matters worse, sorry I’m new to this. But that my families drama and we are working on it J. We are trying to give our princess the best possible life, and where possible re-create the “norm’s” for her. We want life to be normal for her. That is a normal that makes sense to her. I can guarantee that this is not the same normal as mine and should not be the same as yours. We will find a solution and Jenna and my other wonderful children will grow up with permission to succeed and the supports in place to help when they don’t. As I have stated in previous posts I wouldn’t change this for the world… but to the cranky old duck on the Gold Coast this past weekend, if you would like to pay my medical bills, medication and therapy sessions to assist my princess, it would be my honour. (tongue firmly in my check)