Search

My ASD Princess

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

Category

Parenting

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.

Only been given half the diagnosis, and half the answers.

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

Featured post

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.

fidget
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.

 

Featured post

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.

 

Take 3

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.
First Day of School Number 3

 

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.

 

Fishing with Granddad

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.

 

Learning to Push Harder

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.

Our 17th Wedding Anniversary

“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.

 

 

 

 

 

 

 

  • Pressure 

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.

  • New routine

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.

  • Work constraints

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.

  • Saying no

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.

  • Traffic jams

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.

  • Sisters

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.

 

Public or Private

The past 12 weeks have highlighted a conundrum for us with our princess. Do we go Public or Private (about health care)?

Pre-diagnosis a few year’s ago we needed to make a decision. Do we go on waiting lists, accept the initial diagnosis and carry on, or do we go “private” and seek out specialists that Jenna connected with and that could meet her personal need?

We chose the go private, and this decision meant we both had to go to work full time. This decision had and continued to have a family cost bigger than the initial, what’s the best doctor for our princess. It meant holidays were postponed, and things on our own “wish list” were benched and unfortunately in some cases debit needed to become an uncomfortable reality. Further still, the older two children needed to support and be “available” because childcare became unaffordable. The choice to “go private” ultimately meant moving the family to across the other side of the city closer to work, better-aligned schools and our professionals of choice.

I’m not going to rant on the tens of thousands spent, or the impose this choice has had, but rather I want to celebrate the benefits we have seen with Jen.

Yesterday at the Psychiatrist, Jen stated that she wanted a medication change, she didn’t like how it made her feel, and she wanted it stopped. Jen was able to articulate her wishes, and we worked to find a tangible solution. It wasn’t, let’s find the cheapest options or what the government approved this week or even Dad and the Doctor’s choice. This discussion was what will work best for Jen, her schooling, family life and her continued development long term development. 

I walked away $2000 per year poorer, but an 11-year-old girl walked away richer. She was validated and heard. Success!!!!

So why did choose private care for our Princess? Here’re my top six reasons……

  • Validated our choice to explore deeper.
    • We were not happy with an ADHD diagnosis, label, things didn’t look right and the answers we sort seemed rushed. The specialist’s in the private sector spent time with us and explained the autism diagnosis and focused on her (as a person). We explored the diagnosis and the impact that it has on all of us, not the symptoms. In turn, this helped remove the “naughty girl” stigma, and provided a level of expectancy.
  • Treating the cause, not the symptoms.
    •  Our princess’s ADHD, anxiety and social phobia’s are real, but at the core she has autism. We decided to explore various specialists, therapists and medications, trying to gain a holistic understanding of her needs. We keep searching until we found the right fit for her. Her medical needs are always evolving. We need to constantly keep asking questions and questioning the answers given. Not expecting the norm, but looking for the right fit for Jen.
  • Provided us with understanding.
    • It cost us, a lot. But we had time, cliche but we were not a number, phone calls to check up on medication changes, school visit’s by allied health professionals and a truly personized service. This all helped with engagement and buy-in. Jen values her appointments and sees worth in attendance. With her engaging and seeing worth, we see a the strategies, plans and medication regimes working.
  • Schooling is working and feels supportive.
    • With trusted doctors, allied health professional and a great school, we have been kicking some high goals. We are all talking together, sharing reports and learning from each other experiences with Jenna. We all have a shared goal to see Jen succeed. Again this has had an increased cost associated with the support, but support that that been second to none in relation to meeting her needs.
  • Enabled to make the choice.
    • We have been in control; we are paying for the support and have opted out when needed if this was in the best interest of Jen. Giving us choice, power to push for change and a tailored support structure that is meaningful and measurable to our princesses unique needs.
  • Seeing real progress.
    • It is true that money does not buy happiness, but for us, it certainly assisted with the progress. With an understanding of Jenna’s needs, our expectations and what supports work best. For the first time since diagnosis, we can see real progress, a light at the end of the tunnel and hope.

It’s true that we seem to never quite have enough, but what a great investment in Jenna, our family and her future.

Featured post

Staples , extraction and sport 

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

 

ready for staples

 

Powered by WordPress.com.

Up ↑

%d bloggers like this: