What IS working for us

At the end of a very tumultuous term 2 this year where Sno was experiencing major anxiety and a huge amount of traumatic meltdowns, we decided as a collective tribe to give Sno the term off mainstream schooling. We homeschooled her for term 3 and had a much happier chilled out child, but it wasn’t working on all levels. There was still anxiety, there was still issues – they were just manifesting in different forms. Sno kept telling me she missed her friends and so when I raised the idea of going back, she was positive and receptive – and a little apprehensive, understandably. We needed that time however to discover a few things that we could implement into a school environment, and I think we needed that time for some major self-discovery for everyone in our family – but Sno especially.

“Turns out, autism is just tricky no matter where it learns,” she said to me one morning. Yep.

She’s been back at school for six weeks now and things are going really well. Far better than term 1 & 2 and even better than term 3.

I thought I’d share some of the supports and changes we have put into place that have been contributing to the successes.

  1. A four day week.
    This has probably been the greatest change we have made. Sno attends school on Monday, Tuesday, Thursday and Friday. Wednesdays off are spent at home, no outings – no expectations. Just chilling at home. She does not do schoolwork on this day unless it is self-driven. Because Sno only had 2 days at a time to get through, she’s far less overwhelmed. Our school required us to have a supporting letter from Sno’s psychologist to process this flexible arrangement.
  2. Learning about Pathological Demand Avoidance (PDA) and implementing strategies.
    Although it is not formally recognised in Australia (although it is in the U.K.), when our incredible psychologist told us about this and how he believed Sno to fit many of the criteria – I wanted to learn about it as much as possible. In a nutshell – children with PDA refuse things/requests/demands as a means of regaining control when they are feeling awash with anxiety. Once the demands are lessened, so is the anxiety. I have found these resources to be the most helpful, and this book which I inhaled and then passed onto the teachers and beloved Grandparents, too.
  3. Non-verbal communication pathways.
    One of the things that Sno struggles with the most is communicating her wants/needs/worries when she is feeling anxious. For her tenth birthday she received from us her own phone to aide in communication and organisation (using the Calendar and WhatsApp, mostly) and it’s been fabulous. Sno finds using technology to communicate when she’s anxious to be far easier than having to draw attention to herself. Verbal communication embodies far more elements: deciphering body language, facial expressions, working out a good time to talk, drawing attention to herself and articulating emotions. With text on a computer or phone – it’s just black and white, direct and to the point. Sno has been using her laptop that she got given from the Variety Charity to email her teachers and psychologist regularly, too. The other night I was out at my Barre class and I was able to help her through coping mechanisms via text when she was experiencing a panic attack whilst my husband was putting one of our other daughters to bed. Technology has been a life-line for us. When she’s come home and had a rough day she immediately emails her teacher or case worker to let them know. This enables her to have the worry “off her chest” and dealt with immediately, so it doesn’t linger and cause more anxiety.

There have also been other things that have been helping, too.  Things like;

  • Spending the last 20 minutes of every school day in a quiet space in the SEU (special education unit).
  • Using her noise-cancelling headphones during class time (especially music) and assembly.
  • Being given permission to leave class at any point without having to ask when she’s feeling anxious.
  • Beginning each day in the SEU away from the noisy morning banter of the other children.
  • Using a wobble stool in class to provide sensory input and a fidget cube, too.
  • Visiting a Biomedical General Practitioner for supplements to help with anxiety and sleep.
  • Getting glasses with a converged lens from a Behavioural Optometrist.
  • Regular time booked in for Sno with the school’s youth worker to chat and debrief.

Phew! I hope some of these insights are helpful for others in similar situations. I feel confident that things will continue to improve and I am so so so incredibly proud of the amazing achievements and hurdles Sno continues to overcome. I’m also super thankful for the amount of effort all the support people in Sno’s life have been going to for her, because they believe in her. (For the record, I have asked Sno if she’s okay with me sharing this post and she’s actually read over it and approves because she wants to help other kids, too. )

 

 

 

3 Comments

  1. I took my 5 yr old daughter out of school for term 2 this year. She also wanted to go back after a term at home and has been settled in her new school since term 3. Fascinating to see the similar journeys our little autistic thinkers travel! I really love your list of ideas to help, some of these will definitely help us as well, thanks. Wishing you all a peaceful term 4 🙂

  2. These are wonderful suggestions. So helpful. I have also been considering a 4 day week for my 9 year old girl with ASD. The wobble chair has been tremendously helpful. I am very curious to know how you set boundaries with the phone/technology use and if you have other symptoms who may feel that Sno has ‘special treatment’ – I worry that my 7 year old daughter feels that she is missing out when Izzy has time off. I find it difficult to navigate that at the moment.

    • Jessica

      November 10, 2017 at 11:16 am

      Hey Jess
      The boundaries around phone is that it is not a toy – it is a tool. It gets used for text or email or for listening to podcasts/music with noise-cancelling headphones and that is it. It gets kept in the kitchen overnight and is only used when needed. We have told our second daughter if she needs a phone when she is 10 then we will consider it then.
      As far as the day off goes – again it is need vs. want.
      Truthfully our whole family benefits when Sno has time off anyway because we don’t have a screaming overstimulated 10 year old. We really discuss things from a need vs. want approach and talk about how S anxiety manifests to the girls, too. <3

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