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My ASD Princess

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

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My Princess, Always Amazing Me

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I concluded my last blog One Tough Princess back in January, stating that, One thing we have always encouraged Jenna to do was embrace her difference and own those areas in her life that are unique.

Continuing, not only have we seen an increase in self-learning and questions, but amazingly an openness to help others understand and accept a lovely young lady trying to find a place in a world that doesn’t always make sense.

Our princess continues to amaze us with her unique perspective, not shying away from the tough questions and having her point of view heard. This decision to promote free thinking, voice her opinion and encourage difference has produced much anxiety for me, mainly allowing her access to social media, and posting her thoughts, and frank conversations with medical professionals, schools, and her friends.

I thought I would start this blog by sharing a few of Jenna’s social media posts this year (with permission of course).

So I’m posting this to let everyone know that I’m going to speak about the stuff that I’m afraid to speak about. I’m sorry for all the crap I have done to people that don’t deserve that. I’m sorry if I may not look like I’m listening to you, but I am listening it doesn’t mean I have to make eye contact with you or mean that I can’t fidget while listening, I’m autistic just before I say anything else I’m just going to put this out there

“I’m not blaming my autism for anything I’m proud that I have autism and it doesn’t matter if I do stuff differently that’s okay, nobody is normal if you think your normal maybe you don’t know what the definition of normal and different mean because if everybody was normal life would be real crappy. God made everybody different for a reason in brace your differences”

Ok now going back to where we left off. It is scientifically proven that most people who are autistic do not like to make eye contact with people and some people with autism like to fidget with something in their hands so that they can concentrate better. That’s why I don’t like making eye contact with people and if I don’t have anything in my hand it is going to be hard for me to concentrate on what I’m doing. As some of may know that lately I’ve been not in a good headspace and I don’t know what I’m feeling anymore or what’s causing me to feel so crappy. So I just want to let everyone know that If you ask me what I’m feeling like at the moment just know that I don’t know how/ what to say what I’m feeling.

Posted May 2019

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

Posted Feb 2019

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

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

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

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

These goals are ambitious and cause anxiety to her parents watching our princess push herself and stretch. We are seeing progress in little chuck sizes that are worth celebrating. Jenna has extended her school attendance by 45mins per day and averaging 4 days per week at school for about 3.5 hours each time. These areas of stretch are amazing, but wear my princess out, and as such we have seen an increase of behaviours and sleepiness and general disengagement at home. However, as in all things with our princess, we labour on the success, the achievement and progress, and apply understanding and grace to the areas of struggle.

Being a parent of a child who is differently able definitely comes with its challenges and quirks, ones that the everyday family probably would either find weird, unacceptable, or wrong. A few, in particular, we have been interesting and a stretch these past few months. A new behaviour that has been a pain point for the family and Jenna’s carers is Jenna’s need to be alone. That may sound quite normal for most of you. However, Jenna has chosen an extremely peculiar place to be alone, the letterbox. Jenna will sit out the front of our home on the letterbox for days upon days, hour upon hours, with no real agenda, idea why or an outcome she wishes to gain, it’s just her place to contemplate and reflect. Weird, out there and at times confusing for her support staff, but it works for her. Another has been the relocation of her sleeping quarters. Never a good sleeper, we have tried everything to assist Jenna to sleep, trying medication, calming time, low lights, no tech, more tech, music, sensory items, animals, toys with nothing proving to last long term or be the magic bullet. So with increased anxiety and low mood, our princess is ‘bed-sharing’ well mattress on the floor anyways in our bedroom. Not an ideal situation, but when you are dealing with a kid who needs sleep and to be close, it leaves little option.

As you can see it has been an exciting time, one that Jenna has stated ‘….. not in a good headspace and I don’t know what I’m feeling anymore or what’s causing me to feel so crappy.’ With a child that needs to be nurtured and held, we look for things leftfield to assist with her feeling ‘okay.’ If that’s a letterbox or a mattress on the floor in our bedroom, that’s okay for now.

For the friends that have deliberately let Jenna into their worlds this year thank you. We appreciate you more than words can express, or we can affectionately show. From sleepovers, shopping dates, a drive in a race car and being a participant at camping events and at church, these small gestures and tokens are huge markers that demonstrate love and show Jenna she is connected and loved,  Thank you.

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One Tough Princess

As I write this, I am in a coffee shop, Jenna is hanging out with a friend in a shopping centre unsupervised. We’ve come along way! Yes, dad is still needed as a backup, a ‘just in case’, but she, today is able to connect with a friend independently and be seen and interact as every other nearly 14year old girl wants.

This is a first for our princess and hopefully a glimpse of what can be in the weeks and months ahead. That doesn’t mean she’s not anxious, or that she even slept through the night last night, up and down worried about the what if’s, but we made it.

A thirteen-year-old girl shouldn’t hurt and be so overcome by fear just at thought of going outside. It breaks my heart, and you’re constantly torn between keeping her dry and safe and venturing outside to the unknown.

This past year we had planned periods of hibernation, approximately 6-7months 2018 and then a period of bravery (including times pure stupidity) where love and determination overcome the tiredness and we push for new experience and opportunities.

We’ve learnt that the 5mins of sheer delight, always outweighs the pre-planning, panic attacks and overstimulation. Reflecting on the end goal, prize and the simplicity of a ‘thank you’ or ‘that was fun dad,’ makes the journey and life lessons always worthwhile.

Either luring her outside with her ability to connect with younger children, Kmart, McDonalds or bush walks under duress we ensure that although anxiety has a hold, when possible it has no stranglehold. Her tenacity and willingness to in her words ‘survive’ for the main is our only sustenance, and pause in what has become far from what others consider normal but for us, routine.

I thought I understood anxiety, depression and for that matter autism, but this past year has given me a new understanding of our princesses fight.

It’s hard to see the progress through the storm, fights, storytelling to professionals and daily hurdles, however when we do get to pause you see the little things and smile.

I’ve been learning not to focus on the 30 hours of school she doesn’t attend per week or the endless juggling of multiple allied health or medical appointments. Even further the constant seesaw of medication changes, self-harm, overstimulation, fighting and misunderstanding.

If this becomes our focus and measuring

p stick, I would feel defeated and fighting a lost battle. Instead, I’ve been determined to notice these huge milestones these past months that demonstrates a positive movement forward;

    Self-regulation is improving

We have been focused these past six months on building a ‘kitbag’ ‘toolkits’. One of the blessings of the NDIS is we have received funding for equipment. With the help of a team of specialists and trail and error we built toolkits of slime, putty, fidget toys, technology, art supplies. With these tools, we have supplies in each car, at home, her bedroom and school. With discussion, planning and teaching we have now the resources to allow Jenna to calm, focus and play in a way that works for her.

Another example upon reflection that took me by surprise was Jenna’s recent ability to remove herself from stressful situations. Meaning we are seeing fewer meltdowns and hours of readjustment. This seemly simple act, as an example of removing herself from an overpopulated pool, means she can experience and connect but disengage when it becomes too much.

  • Planning for her future

Seems simple and logical, but a new world has started where we are dreaming and planning further than tomorrow. Career goals, little goals of extending school attendance, making a friend. I can’t say her self-worth has improved or the uncomfortable thoughts of harm and dread, but again we see glimpses of light emerge when we talk about the possibilities and what if’s.

  • Taking more control

We have seen an ownership and a preview of independence that only a few months ago, we thought only a dream. It’s the little things;

13 years of not able to clean her bedroom, to wanting to put clothes away.

Taking ownership of her sensory issues around food and learning to cook simple meals (noodles, mac & cheese, sandwiches.) Mum and Dad would like fruit abs veg added, but we are eating, planning and making decisions, progress.

Pushing herself to do what best and better in her eyes.

Looking for alternatives, when the chosen are impossible, for example waiting for movies to come on DVD rather than being uncomfortable at the cinema, and being okay with that.

  • Wants to be her best

Again baby-steps but we are seeing a driven young girl that wants to do better. Learning where it safe to push, and where she is not ready.

Notable successes to close

As I wrote at the start, I said we had times of hibernation. We have seen some markable progress when your benchmark was the front driveway, these are amazing.

We ventured out and had three separate successful visits with her Cousin.

After a considerable break, we are back attending church regularly and connecting with younger families and school friends.

In conclusion and my personal favourite, teaching those older than her about anxiety & autism. One thing we have always encouraged Jenna to do was embrace her difference and own those areas in her life that are unique. Not only have we seen an increase in self-learning and questions, but amazingly an openness to help others understand and accept a truly beautiful young lady trying to find a place in a world that doesn’t always make sense.

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High School – Unpredictable, Harsh, Damn Hard Work.

 

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

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

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

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

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

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

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Jenna’s artwork about her fidget spinners

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

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

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

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

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

 

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LOVE, My Gift to our Princess.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks, Mum & Dad.

What A Month

January was a tough month in the household.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Thank you for Being Brave

Daddy wants to write you a letter and say thank you.

  • Thank you for asking questions
  • Thank you for adapting and embracing your autism diagnosis
  • Thank you for being proud of who you are
  • Thank you for teaching me to see the world differently

Last weekend we played together in the city, thousands of people around, noise, lights, sand. It was hard for you. We held hands and embraced this adventure together, remember the fun we had?

You controlling the fireworks, you swam at the beach and we walked through the shops enjoying plain cheese pizza for dinner.

It was great the your wore you headphones and brought sensory toys to help when you became overwhelmed, I’m proud of you for trying new things. I think it helped you heaps.

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You make my days fun princess. I go to bed each day not complaining about the lack of sleep, a new slime stain on my floor or even that a weeks worth of groceries was used in the backyard for play.

I fall asleep grateful, grateful that my life is full of adventures, laughing, craziness and sneaky cuddles.

They are my favourite btw, cuddles that is. Thank you for random cuddles, I know you don’t like them too much, they are so special to me, and I treasure each one. While we are saying more thank yous, thanks you for constantly trying. We know that going outside is hard, reading people is hard living with 5 others at times is hard, but we tackle this together.

This year has been busy, and you have been bombarded with doctors, therapy sessions, medication and routines. It’s been exhausting, tough and we both wanted to quit, although nearly one year on we are both stronger. Home is a safe place, a place that it’s always okay to experiment, test theories and if needed meltdown. No judgement there, just unconditional love and acceptance .

I was remembering your plan at your new school, you made up a way to explain your autism to your friends. At the point of introduction you apologised. You stated you might say things that may upset them, I’m loud and sometimes and can be rude. I was so proud, that was a very grown up decision to make.

Did you notice that this choice has made school so much easier this year and you have so many friends?

Well done!

Lastly thank you for the laughs, you make me laugh everyday (some days you don’t mean to but you are so funny) you are litteral, see  the world your way and have the most inappropriate houmor.
Keep trying, keep dreaming and keep proving the others wrong.

Love you sweetie,

Dad

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My top 13 tips as a Dad.

I was having trouble sleeping last night (the joys of a 10 years with sleeping difficulties) so I thought I’d write a few thoughts of my own on parenting, mostly just for a laugh.

My faith is the center of all decisions I make. Hopefully without the references to seamless bible verses and the cheesy one liners you know that my parenting is done with the lens of a personal relationship with Jesus.

My family is my life. All else truly comes a distant second, even my career, friends and wine. Making this a conscience choice several years ago has been the best decision I have recently made, second only to when I said ‘I do’ many years ago.

My Top Tips

  • Never stop laughing at farts.

Trivial I know, but vital. My wife thinks I don’t have a sense of humour, but….. Have fun, laugh heaps and when needed be disgusting just because you can. Your kids will thank you for it, and its fun.

  • Always make time for play.

I have trouble switching off, and I am not the world’s biggest fan or gymnastics, AFL, drama or the arts. But my kids are, so play, not what I think is important or fun, but what they do.

  • You’re never too old to dance with your children.

Top 40 is all we listen to and I have been told that I am the world worst dancer (refused to dance for so, so long) but again, this is important. I even danced at church on the weekend, front and center (Ring a Ring o Roses style).

  • Don’t try and equal your time out between kids, just make it count.

I don’t do the daddy date thing, but when I’m focused with one of the children I work to be involved, make it unique, and make it count.

  • Apologize when you get it wrong.

Own your mistakes, I blow it often but make a point to apologize and try and move forward. I also give the kids time to be upset with me.

  • Love your spouse, and when needed gross out the kids with affection

I show affection, and my kids always know that I love their mum to bits; I don’t want this to be abnormal or ever to change.

  • Be consistent with discipline, but make it unique to them.

With a child with autism in the family it sometimes feels that life is unfair at times, the truth is it is. But learn what discipline your child responds to best and be consistent and in partnership with your spouse.

  • Extracurricular activities are boring as hell but important. Make it a priority to help your kids find something they love.

Yes, we do piano, football, drama, musical, youth group, sleepovers, and gymnastics. We have made this a priority at home, yes it can be a pain and some are expensive. But for us it’s worth it.

  • Don’t be afraid to say “I don’t know”, but help find a solution.

My kids think I know everything (mostly I do), but when I don’t, I let them know and help find the answer. We learn together.

  • Tell your kids often that you’re proud of them

Hard one for me, but vital that our children know they are doing well, and kicking significant goals. We don’t measure against their siblings or others. We measure their effort and application.

  • Listen.

Make time to hear them out.

  • Make time for family.

This is really really hard.  Busyness, different interests, autism, adolescence all put a strain on family time. We are still looking for what fits best, but when needed we compromise. Movies seem to be the winner most times.

  • Be flexible, and willing to change your plans.

Again a hard one, but my family trumps church, work, and friends every time.

Thanks for hearing my thoughts, please feel free to comment.

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