World Autism Awareness Day

The 2nd of April was World Autism Awareness Day. Just search Twitter, Google, Facebook, or Instagram for #lightitupblue or #LIUB and you will find pictures of buildings, monuments, and the Wonders of the World all lit up blue for autism awareness. The Sydney Opera House, the Pyramids of Giza, Christ the Redeemer, and the Niagara Falls all lit up blue.

This day came to my attention about three and a half years ago. At the age of three, our son Wiremu was flagged at preschool for having very little verbal communication, and limited social interaction with other children. As our firstborn, we had dreams of raising a trilingual super-child (Samoan, Māori and English) and we assumed that because Wiremu was learning three languages, he didn’t speak as quickly. We also thought that Wiremu didn’t go out of his way to interact with other children because there simply weren’t that many children around. He loved the many adults in his life and was very close with his grandparents, aunties, uncles and cousins.

Wiremu

When the Ministry of Education and all their specialists became involved at the beginning of what was to be more than a year long series of diagnoses, we really believed that they would find that there was nothing really different about our son. The truth is, autism is estimated to affect up to 40,000 individuals and their families just within New Zealand. It has a higher prevalence than Down’s Syndrome and cerebral palsy. Chances are, you know someone that is autistic or has a family member that is on the autistic spectrum.

Being the good librarian that I am, as soon as it became clear that Autism Spectrum disorder was a likely diagnosis for Wiremu, I went straight to the library catalogue and searched for resources on autism. My readings informed me that ASD is a complex developmental disorder involving delays in problems with social interaction, language, and a range of emotional, cognitive, motor and sensory abilities. Since then I have easily read, watched, and at least reserved (took one look and instantly returned) most things autism related within Christchurch City Libraries. At one stage, there was almost a whole shelf of books on autism in the relatively small community library that I was working in.

Autism

There was also lots of very informative websites like Autism NZ, and Facebook groups for parents with autistic children that were awesome e-support networks, online forums, and videos. I think as a parent or carer of a child with autism, it is firstly important to get your head around what autism is. I read book after book about these families of autists, but I found it so hard to fit what I was seeing at home into this stereotypical definition of autism. Wiremu is so loving, he is a wonderful judge of character, his smile lights up a room, and his giggles are infectious. He adores swimming, sausages, Michael Jackson, rainbows, his little brother Che and Mickey Mouse. He doesn’t know many personal boundaries, so if he likes you he will sit on your lap and give you a full kiss on the mouth.

Once you realise that autism presents itself so differently in every individual, and that there is no cure for autism it makes things easier. With the support of loving family, friends, a team of awesome specialists and some amazing teachers and teacher aides – and some good quality information – all things are possible. Wiremu is currently attending school, and is fully integrated into a Year 2 mainstream class with the help of his teacher and wonderful teacher aides. Just last month, he started writing letters without prompting and matching the letters of his name. As a family, Wiremu has taught us to slow our fast-paced lifestyle, to appreciate and celebrate the tiny but monumental achievements we make together everyday.

I have made up a reading list of some helpful autism resources for parents and families. Don’t be afraid to seek help, there are some wonderful people out there that are always willing to do what they can. And don’t always take no for an answer. #LIGHTITUPBLUE

Autism resources

Brave

Last Friday I was invited to the Aranui High School Music Block as the “library representative” to BRAVE- Daisy Poetry Promenade and her very special guests. Being the uncultured and not very creative heathen that I am, I wasn’t in the slightest prepared for this mind-blowing space collaboration of Samoan heritage, arts, music, and the poetry of Daisy herself. Just to put things into perspective, I know Daisy in a rugby-sense, that power that she exudes so effortlessly on the rugby field is ever present in her art, music, and this poetry promenade.

Daisy - Photo Credit: Joseph O'Sullivan Photography
Daisy. Photo Credit: Joseph O’Sullivan Photography

There were six stages in the promenade, our group of 60-odd was split into two groups and as we passed each other from stage to stage you could sense both the anticipation of the next space and excitement fizzing over from the last visited space.

In the first space: Vasa (vasa is the Samoan word for sea or open ocean) – Daisy’s family took centre stage with husband Seta Timo picking a traditional Samoan hymn on the double bass, followed by daughter Hadassah – all of seven years old – relating her experience as a second-generation NZ born Samoan in the poem “I am a teine Samoa.” Daisy and Hadassah spoke of the fibres of their lives being interwoven like a fine mat, this for me, was the perfect analogy of the richness and beauty of the whole performance.

The different stages wove the strands of Daisy and her life thus far, showcasing the musical Pasifika talents of Christchurch including DJ Infared – fresh off an international DJ tour, Christchurch’s premier session band – The Judah Band, Nathan Phillips, Zion Tauamiti, and some massive gospel talent with Lady Julz representing South Auckland. Each stage was threaded together by Daisy’s poetry, and there was also an emergence of new poetic talent incorporated in Annabel Ariki and Maddie Mills of Cashmere High School.

The integration of the Samoan culture was something to behold, captured by Joseph O’Sullivan and John Ross. O’Sullivan and Ross emboldened some of Christchurch’s pe’a, malofie (pe’a or malofie is the Samoan tatau – tattoo –  for men) and malu (Samoan tatau for women wearers – including Daisy) to tell the tales of their tatau through videography and photography. The moving full-length contents of these interviews and some of the images will eventually be gifted to high schools in Christchurch to include in their Samoan Language curriculum.

In parallel to Daisy’s oratory capabilities, the last stage was a re-enactment of a si’i alofa, which is a gift giving ritual that takes place at a wedding or funeral. The si’i alofa is usually a place where the chiefly Samoan language is spoken, they speak poetically and in metaphors and make reference to history, myths and legends, and the natural world. Like the si’i alofa, in the words of Daisy herself, at the centre of it all is love.

This collaborative space project was enabled largely through the love of many people; people that share a love for the arts, Samoan culture and ultimately the drive, vision and love of one woman, Daisy Lavea-Timo who is well beyond Brave. This show is one that will no doubt be shared on all creative platforms and stages not just here in Christchurch but further afield.

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Cover of The Elocutionist Cover of Ua tālā le ta'ui