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.
Jenna’s high school is speaking to her about autism and helping her explore what that means for her.
We have natural supports within 10mins from home that frequently help with the kids and when needed us.
Jenna has made a friend at school.
We have joined a local church, as a family and the first youth group event went well for all the four kids.
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.
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 have started yet another therapy journey for Jenna, and its been a fantastic eye opener for us all. The next chapter has unlocked some permission for our princess, and we have seen an increased need to feel grounded, increase movement and tactile play. In short she has got in tune with her sensory side.
This new found permission (self given) has been a release for Jenna, though super tiring for us as parents.
– an example of her sensory needs.
This journey has been assessment based. With a focused look into her needs, tendencies, how she plays, interacts with others and her routine. We started to investigate where she gets her energy from, what “down time” looks like and what things are causing Jenna stress.
It was an eye opener for me and with hindsight brought further understanding of Jenna these past ten years.
We had our parent only session today and unpacked the assessment findings. In short Jenna in is constant sensory overload and in a constant state of arousal (an explanation of her Go Go Go attitude). The therapist commented on how “you should be exhausted” 🙂 YEP.
Again further validation of the scaffolding, routine and support we are providing constantly at home. With some help, the right tools and equipment we potentially will have another win for our princess. Additional supports.
With time we are hopeful we will see an improvement or awareness for Jenna in:
Her ability to self play and play with others.
Her need for and understanding of personal space.
How she responses to touch.
Posture and balance.
Our hope is that over the next few months of occupational therapy we should see a changd. Providing assistance in building Jenna’s ability to participate in everyday routines, tasks and activities.
This will be our focus for the next 3-6 months with an aim to get a better hold of and a greater understanding of Jenna’s sensory needs. This will feed into further therapy sessions later this year with her psychologist.
Just because, let us start the post with a laugh at my parenting this past few weeks…….
Here is a quick top 5 life lessons I have learned with a sick ASD kid this past three weeks;
If you have failed to offer sensory play to your child, she will use her dinner (scrambled eggs everywhere and I did not learn).
The couch can carry a lot of snot if you run out of tissues. (again I did not learn from this mistake).
It doesn’t matter how much food is in the house, there’s always nothing to eat, just apologize to move on.
Don’t use noise canceling earphones to get a quick 5 minutes respite (it will cost hours of comforting because you didn’t hear her calling).
Don’t be late home from work, if you give a time stick to it (I very rarely give a specific time, failed this one again).
As a bonus extra, you need to laugh. We try and find humour in the situations we find ourselves in, if we didn’t particularly this week…….. WOW.
We are nearly six months post diagnosis for our princess, I think my naivety has caught up with me. In our second post, I talked about. – “We are starting to adjust to the diagnosis a little better, although the magic word ‘Autism’ won’t take away frustrations, meltdowns and communication barriers, it helps frame them for us,” read here.
I am starting to believe that we may never truly adjust to this diagnosis. However, we now have a far better understanding of Jenna, the fluid nature of ADS. We have learned that autism is an ever changing lifelong diagnosis and sometimes a challenge for us all.
This past three weeks Jenna has been unwell with the Flu and then a perforated eardrum. It seems her slender build, fussy eating, and poor sleep patterns disrupt the natural healing process we all are accustomed to. This bout of poor health has disrupted the one thing that keeps us going, routine (you can read more about this here).
Our Princess with our new family addition, Snow.
We have had three weeks of no Gymnastics, extra medication, and little sleep. Myself and Jenna have moved into the lounge room to assist with the families lack of sleep. Our couch now has each night, a teddy bear, two dogs, a Daddy and Princess Jenna. (see above)
When life turns upside down for us we see the challenging side of autism take over, the side that struggles to articulate pain, vocalize concerns and address fears. Because of illness the uniqueness, creativity, and bounce that we are accustomed to having laid dormant, and this stinks.
Not that I want my post to be rants, complaints and poor me’s. (this was a conscious decision years ago to be positive, solution focused and not to air our “dirty laundry”) but the past two weeks I would easily give back.
And just because we needed another curve ball this week, there was a need to deal with doctors. I dislike general practitioners at the moment, not because of incompetence or malpractice, but because I have had all sorts of pain assisting them all to listen to Jenna and be patient with her response. Jenna finds it hard to articulate what going on for her. We often need to step in and help a little, this is embarrassing for Jenna difficult I know for professionals, but a little help or understanding was needed.
We have had three doctors visits over the past two weeks with no result. All stating “you have a cold Jenna, rest.” As stated in my post “Stop looking at my daughter” heading out in public is a difficult feat, and to do this multiple times in a week puts undue stress on our princess.
So with the help of Snow (the dog) we are moving forward slowly with the princess, with all therapy based assistance on hold, sensory play being modified it has been an interesting time. It’s time to rest and get better. I have learned heaps through the process, although I am ready for normally.
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.
This week we received a diagnosis of Autism for our princess. Last year it was ADHD, the year before ear problems and before this hearing issues.
This has been a 5 year journey of experimentation, failings, labels, and stereotypical comments. She’s “naughty , loud, weird” , we were constantly being told by school “you need to get her checked out” “there is something wrong with her” “have you considered testing?”
Glasses prescribed, grommets inserted, hearing tested, IQ testing, and behavioural optometrist sort for advice. Each specialist sending detailed reports on how to help her.
But still the label “naughty, misfit, failure, loud.” were how people viewed her.
We just know her as Jenna.
This week as I sat and pondered what this diagnosis means to us as a family and to me as a dad, I was at a loss.
Getting it wrong for the past 5 years I asked myself these questions:
Did that lesson my abilities as a Dad?
I missed the signs for Jen, what else have I missed?
What did I do wrong?
Why did I miss all the signals?
I soon got over myself and came to the understanding that the girl I know as Jenna is still the girl I adore.
As I began the road of discovery I began asking myself and for that matter anyone who would listen these questions:
Where does she fit on the spectrum?
What have I missed?
What treatment is needed?
What do I need to change?
Have I made the problem worse?
How do I shut up the skeptics?
How do I embrace her uniqueness?
Does she need “the label”?
Putting all the rules, diagnosis, stigma, and people’s comment aside, I can come to a conclusion.
Jenna is Jenna and Jenna can be Jenna and no label will change that I love my Jenna.
She is unique, different and honesty will find it difficult to fit into cultural norms for a very long time.
That diagnosis of ASD can’t change.
I can’t change that my daughter can’t read social cues correctly.
I can’t change that creating friends will continue to be a challenge for her.
I can’t even change that she is the most literal person I have ever met.
Jenna is Jenna and Jenna can be Jenna and no label will change that I love my Jenna.
If I could make a wish, dream big for Jenna it would be very simple; I want people to value her, laugh with her, and embrace her uniqueness.
Just like every one of my 4 children they have the potential for greatness. A potential to change the world. I just pray that like myself I see the greatness that is my 9-year-old ASD kid, as we know her at home Jenna.