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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 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.

Autism and Sickness = Sucky Times

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;

  1. If you have failed to offer sensory play to your child, she will use her dinner (scrambled eggs everywhere and I did not learn).
  2. The couch can carry a lot of snot if you run out of tissues. (again I did not learn from this mistake).
  3. It doesn’t matter how much food is in the house, there’s always nothing to eat, just apologize to move on.
  4. 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).
  5. 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.

What About The Other 3

1891344_10152857905768590_5097542224536606198_oTo 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.11046368_10152857907768590_1411971595995450382_o

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.

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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.

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Stop looking at my daughter

It’s been a tough few weeks, admittedly we were expecting this moving into more active therapy season and meeting new people; but it sucks all the same. My princess is tired, anxious, and generally fearful which in turn affects her sleep patterns and relationship at home. Mum and Dad understand this and gives ‘the princess’ the space she needs and home life on the most part is safe and okay. It’s accessing the community that has been a struggle. We get both extreme’s, Jenna want’s to explore Kmart’s toy section and local parks but beyond this its very painful for us to venture out. This is proving to be a difficult task with 3 other children with their own interests and schedules but we always find a way and solider on. When given the time to be alone, run and play the next few hours are fantastic so we have adopted a model of support for Jenna to assist to ‘recharge her batteries’ so to speak. We have personally become acquainted to every park in a 5km radius from home (we know every jungle gym, swing set, spiders web and how to get there multiple ways). Although my princess is unable to articulate which park to go to, we eventually make it to her chosen destination and the unwind begins.  Dad has learnt some cues to assist with finding the right park (we have been known to go to 6 parks in a row until the find the perfect one). I look out for grunting sounds, frowns, smiles, the amount of people at the park and presently does it have bars to swing on. Scaffolding although a great help most of the time for us doesn’t work here, I can’t seem to find the correct words to assist Jenna precisely express what she needs. The parks help although we are still experiencing at times very violent meltdowns, sickness, numerous fights with siblings, and an inability to explain what’s happening to her. We still are having difficulty with very public outbursts when we are needing to end an activity. As most kids with ASD routine is very important to Jenna. We are learning that it’s not the routine that we established that is gospel. It’s the routine that Jenna has understood, this has been a hard lesson to learn. Although a tough time has been had by all we have learnt that this is part of what we need to do as parents and as a family. We need to constantly teach our other children to work through the problems of the day, meltdowns and harsh words, explaining that at times this is Jenna. It’s Jenna not because she is a rude girl, she doesn’t really hate you and mostly she really cares about you. We have bad days because we have trouble understanding what Jenna is trying to say to us. It’s easy to teach, discipline and model the correct and expected behavior for our own family. Although we have been really taken a hit this past few weeks from others (mostly complete strangers.) We can teach others, work on models of support to reduce behaviors, but I am coming to the realization that some people I meet have the wrong idea or end point for these tools. These tools aren’t to make my life easier, they aren’t even there to help the school system or the local supermarket. We invest our time and money to see our Jenna reach her potential. We work damn hard to up-skill her so she can succeed, make friends and have the life she chooses. These tools are for her. We are working with tools, strategies and various therapist to give my princess a chance in this harsh world. A world that doesn’t seem to understand and for the most part want to educate themselves. I am finding that the adage that ignorance is bliss fits well. I am the person that usually takes it all in my stride, keeps on keeping on, etc. but…… As I already stated, we have had a rough few weeks with our princess. So with this in mind please allow me a little licence  to vent my frustration…………..

  • Yes it’s hard
  • Yes I get embarrassed
  • Yes, I wish I could go on more family outings.
  • Yes, I feel for my 3 “neurotypical”  children sometimes
  • Yes, I want to chastise my other 3 children sometimes
  • Yes, I love her to bits and will fight anyone that wishes to limit her
  • Yes I hate you looking at me in horror and at her in disgust
  • Yes I know she is making a loud noise and disrupting you
  • Yes it’s okay for my 10-year-old to play with “little kids” toys and equipment

We have recently spent the weekend away, the world wasn’t overly kind to us so I thought I would “apologize” to some of the looks, comments, and arrogance we experienced over the weekend.

  • I’m sorry that I brought her out in public

I could lock her away if you prefer but I for one think she adds life and zeal wherever she goes. She lights up my world and if given a change she could do yours. Please stop for a second and realize that she is NOT different, naughty, or a nuisance.  She is a 10-year-old beautiful girl finding her place in this world.

  • I’m sorry that it’s important for us to expand her capabilities

Yes, I will continue to go out for dinner, explore the unknown and try new things. This will cause all parties pain, often, but every now and then….. eureka we struck gold and a new place we can venture is found.

  • I’m sorry that you don’t understand or want to understand autism

If you asked me I would take the time, stop and explain the complexities of ASD, ADHD and anxiety. The dirty looks, shaking heads, stares and laughter don’t help. They make my daughter more anxious, it makes her feel naughty and bad. It makes the hard work invested feel worthless and as for her parents self esteem, well….

  • I’m sorry that I break the rules sometimes to meet a sensory need

Yes I break the rules!! I manage risk, and ask myself, do I need to follow the social norm and some printed rules. Yes this is intentional, No I don’t need you to remind me I’m doing it. Again I am happy to explain autism to you.

  • I’m sorry that your needs are more important than her’s

My whole existence is to ensure my families success, at times that will mean that my princess makes too much noise in public, she will be inappropriate. More often than not I will get it wrong and make matters worse, sorry I’m new to this. But that my families drama and we are working on it J. We are trying to give our princess the best possible life, and where possible re-create the “norm’s” for her. We want life to be normal for her. That is a normal that makes sense to her. I can guarantee that this is not the same normal as mine and should not be the same as yours. We will find a solution and Jenna and my other wonderful children will grow up with permission to succeed and the supports in place to help when they don’t. As I have stated in previous posts I wouldn’t change this for the world…  but  to the cranky old duck on the Gold Coast this past weekend, if you would like to pay my medical bills, medication and therapy sessions to assist my princess, it would be my honour. (tongue firmly in my check)

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My Princess (insert label) ASD + ADHD girl

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.

But…….

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.

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