Ebb and Flow.

One of the best things about writing a blog, is being able to look back on your life and see how much has changed. We are often so busy looking forward, we forget to reflect on how far we have come.

In December 2012, a few months after Milla’s second birthday, she was diagnosed with autism spectrum disorder. She was unable to use language to communicate, instead using it to label and repeating herself and others over and over (echolalia). She had never said ‘mum’ or ‘dad’. She wouldn’t eat and would have meltdowns three or four times a day, on a good day. She had illogical fears of things that didn’t make sense to us. A ticking clock, a stuffed zebra, a sock puppet. Sometimes she would wake up crying, and cry all day long until bedtime.

The days were long. I didn’t understand her and she didn’t understand me. Meal times would always end in tears, hers and mine. I felt useless, incapable. How could we ever get through this? She would scream and cry if another person so much as looked at her. We didn’t leave the house much. What was the point? It always ended the same. Tears, explanations, a hasty exit.

We slowly learned the rules. What order our routines had to be in. What foods would be eaten, what temperature they had to be and what dish they should be served in. What words we had to use and when to use them. What television shows brought on fear and meltdowns (Dirt Girl, to this day) We became experts at reading Milla’s mood, from the moment she woke up. We planned our days accordingly. We knocked back most invitations, and eventually they stopped coming. We felt isolated, but united. Milla was our world, and we celebrated every achievement. The first time she asked for ‘more’. The first bite of a new food. Waking in the morning without crying. We discovered Milla was most happy outside, in wide open spaces and no people to get up in her face. We spent the weekends exploring together; bush walks, rock pools, botanical gardens.

Then came the anxiety and the fear. The three months that Milla and I spent essentially trapped at home. The world was too noisy for our sensory girl. Even home was not safe. Reflections, ceilings, shadows and marks that only she could see. The movement of the clouds, the cat looking at her or not looking at her. We had come so far, and it was shattering to try and adapt, to learn the new rules that only seemed to make sense to Milla.

But even taking two steps forward and one step back, we are still moving forward. Inch by inch, day by day. Practise makes perfect, and we are so much better at jumping the hurdles that are placed in our path.  So many times over the past three years I have felt defeated. I read back over my own words, and remember the pain and the tears. The fear and the desperation. Yet here we are.

Miss Milla is five and started school this year. A main stream school, without an aide. She is bubbly and bright, kind and compassionate. She loves animals and geography and tested above average in language skills. She huffs and puffs, crossing her arms and declaring ‘Not fair!’ when things don’t go her way. She is argumentative and inquisitive. She drops some cracking one liners and is (at times) painfully honest.

She will only use disabled toilets when out due to her debilitating fear of hand dryers. Every night we have to say “Good night, sleep tight, see you in the morning light”, twice, before bed. At school drop-off we have a kiss and a cuddle, high five and a pat on my shoulder, then I have to walk out the gate whilst Milla watches me, then she races inside to watch me through the window as I walk past waving until I’m out of her sight. Don’t ever ask Milla to take deep breathes, unless you want to witness a meltdown. We still live by her rules, but we are all better at stretching them, bending them slightly.

Does it get easier? Absolutely. Then it gets harder again. Living with a child on the spectrum ebbs and flows. We have spectacular highs and devastating lows. We never stop learning, all of us. We alternate between teaching Milla and her teaching us.

Our ‘normal’ may not look like other families, but it is ours. I couldn’t be prouder of how far we have all come

04 comments on “Ebb and Flow.

  • Cathy B , Direct link to comment

    My precious Granddaughter is on the spectrum, 6 and started prep this year, 2 years of AEIOU seems like a breeze compared with the ‘settling in’ we’ve had with mainstream school. We’re hoping things get better once she becomes used to some of the strangeness. Life is always different and interesting with our girl, she sees the world differently to us and your right she’s always teaching us how things look, sound, smell and feel to her.

    • Jane , Direct link to comment

      I hope she settles in soon at school Cathy. We had a rough year at preschool last year, but thankfully the transition has been a bit smoother to school xx

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