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My ASD Princess

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

Month

May 2015

What About The Other 3

Weekends are really hard for the “house of many hopes” thought I’d reblog our holiday post to give you a little more insight.
The fine balance of 4 fiercely independent children and “family time” often clash in epic proportions. By Monday we are ready for work, but grateful that we had time together.

My ASD Princess

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…

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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.

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