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.