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My ASD Princess

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

Month

September 2015

5 Reasons We Continue To Go Outside

Truthfully we have fun, our philosophy is to remember the highs and try and forget the lows. This choice makes every time we go outside a memorable day in a fantastically good way.

https://myasdprincess.com/2015/09/26/5-reasons-we-continue-to-go-outside/

5 Reasons We Continue To Go Outside 

We often get asked why we continue to head out to dinner, festivals, events, cinema, and events where large amounts of people are. We get… “Why do you guys put yourself through this?” “Is it fair to get Jenna so upset? “Don’t you get embarrassed?” , “what about other people around you?” , “Shouldn’t you stick to McDonald’s?”

To tell you the truth we ask ourselves similar questions too. It’s tiring, the other 3 kids get very overwhelmed and at times its very expensive. If you don’t get the prep right, potential behaviors. If you get the social story wrong, potential behaviors. If the event isn’t how Jenna expected, potential behaviors. But still we head out most weekend and look for new opportunities, fun and family experiences.

So tonight I thought I’d share the top 5 reason we have intently decided to go outside.

  • New experiences

I work in the disability sector and the heartbreaking stories I get told frequently about individuals never experiencing a holiday, going to the movies or going out to dinner breaks my heart. I want Jenna to have the same greater opportunity and experiences than I was afforded (and I had plenty). We keep looking for a peek experience that resonates for her. We get it wrong more than right but we keep getting back on the horse so to speak, again, again and again.

  • Normalization (both for us and our princess)

Similar to above, but so important. I want Jenna to first be a kid that lives in the big city. We need to feel “normal” and feel like a family that does “normal” things too. When life get tough we go indoors and lock ourselves away. Its easier that way. We are private people and get our recharge at home (nice wine, movie on our large couch). Its often a hard choice but we deliberately choose to go outside and do “normal” everyday family activities. This point is by far the most important for our other 3 kids, often feeling ripped off!, we go out for them.

  • Jenna can learn appropriate social behaviors

Our princess goes to intensive therapy multiple times per month to learn how to behave socially. So we go out and practice. It’s hit and miss, but a valuable safe testing zone for Jenna (because we are with her). We are constantly scaffolding for Jenna, breaking down tasks and explaining expected norms. All this training needs to be tested, rather than setting safe easy places we just hit the town and for the most part we “see what happens”

  • Others can be blessed by her nature and kindness

A secondary benefit is that other people see Jenna’s heart. Whether it is asking to pat a dog, introduce herself to a family with a 2 year old or just see her dance and be happy. Her excitement if infectious.  These are the times that autism is a distant second to a caring young 10 year old girl.

  • Educate others about autism 

When the crap hits the fan, we choose to educate rather than to get embarrassed. This choice really sucks, because its not about embarrassing the ignorant or shouting at the arrogant. We choose to take the time to explain the reasons for her behaviors. We take ownership, apologize and then we try to educate.

I have listed the top 5, but this is not why we do what we do everyday.

Truthfully we have fun, our philosophy is to remember the highs and try and forget the lows. This choice makes every time we go outside a memorable day in a fantastically good way.


The Mighty Contributor

OT – the next chapter begins for our Princess

What a whirlwind of a month….

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.


The Mighty Contributor

 

 

 

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