Special Needs

Why I do what I do

Why I do what I do

Over the year I’ve been actively following, listening to, and engaging with as many disability self advocates as I can. I’m aware of my abled position of privilege as an ally, and I’m trying to use the right terminology, and pass the mic, and generally just nott fuck it up.… Read more

Guest interview – Achievement Center of Texas

Guest interview – Achievement Center of Texas

On almost a weekly basis I get an email from an organisation asking to write a guest post for The One in a Million Baby. It’s not something that I do with the blog, but I always appreciate the emails, especially when they come from organisation that are doing good… Read more

Autumn – hues of technicolour depression

Autumn – hues of technicolour depression

We’ve had a terrible summer. The weather never seemed to realise we were waiting in our shorts and singlets, and it held out on us for months. We had days, not weeks, of sunshine, and then suddenly, it was March, and Autumn was upon us. Eva was born at the… Read more

I see a girl…

I see a girl…

I have this photo on my phone of Eva. I spread the apps out across my phone so that there’s a screen with just one app and I can swipe through the screens until I reach her face, free from apps in the way. It’s the face I see before… Read more

#Notspecialneeds

#Notspecialneeds

In the world of social justice, language is important. I consider myself fairly woke, or if I’m honest, in a continuous process of waking up, and almost daily I learn something about the language I’m using in reference to disability, mental health and ableism. I thought I had the disability… Read more

Eva’s third birthday

Eva’s third birthday

Eva’s birthday is coming up. April 6th. She would have been three. Every few months I play a thought experiment, and try to imagine both our lives if she was still here. I imagine the big things, her crawling, her hearing sound with cochlear implants, her and I living together… Read more

Rare Disease Day – my speech

Rare Disease Day – my speech

Last week I gave a speech for the New Zealand Organisation for Rare Diseases on Rare Disease Day. It was just 3 days after Eva’s anniversary and I was a bit worried about how I would cope. I managed to get through till the last paragraph before I cried, so… Read more

New photos of Eva

New photos of Eva

I have hundreds of photos of Eva. My phone is never far from me and I used it, a lot, to capture her smile, her successes in tummy time, he cry, I captured everything I could. Even with these hundreds, and the dozens of videos I captured too, there is… Read more

Two years since she died

Two years since she died

It’s hard to believe it has been almost 2 years since Eva died. Eva was only here for 10 and a half months, less than half the time she has already been gone, but I will feel her loss and the hole she left behind her for the rest of… Read more

Disability as a unique demonstration of diversity – not misery

A woman kills her 20 year old daughter and the public’s response is to call it a mercy killing. Donella Knox murdered her 20 year old daughter Ruby, who had severe Autism spectrum disorder and intellectual disability. The Herald reported that Ruby had a number of associated conditions in addition… Read more

Let’s put people before our wallets

It’s a hard time to care right now. It feels like there are too many horrible things happening. Too many fires to put out. Too many irons in the fire. The heat starts to dim, because we are stretched too thin. But while it’s hard to care, as a white… Read more

Dear Mamas podcast with guest, The One in a Million Baby

Before Christmas I got together with two fantastic women, Emily Writes and Holly Walker, on their podcast Dear Mamas which features on The Spinoff to talk about what it’s like to be a parent when someone in the family has chronic illness, medical needs or disability. We discussed Eva and… Read more

Podcast transcriptions coming!

It’s been a long time coming, too long in fact, but very soon I will be getting transcriptions for the podcast. It’s something I’ve always meant to do but with working full time and podcasting on the side I haven’t had a lot of extra time to sit down and… Read more

Rare Disease Day

Today I met with someone from The New Zealand Organisation for Rare Disorders, NZORD, to talk about Rare Disease Day in February next year. Rare Disease Day is an annual day at the end of February that is celebrated internationally. NZORD is a space for patients, family, friends, clinicians and researchers… Read more

The hardest thing

The hardest thing

On Thursday a new episode of the podcast will come out. Instead of asking the questions, this time I will be the one telling my story. I asked my talented friend Kelsey Dilts McGregor to help me and step in as the host for this episode. Towards the end of… Read more

Dreaming of Eva

Dreaming of Eva

All my life I have had an active sleeping life. I’m a sleep talker. Former sleep walker. I do it nightly, sometimes multiple times a night. As a kid, and well into my teens, I walked in my sleep. When I was 15 my Dad built me a mezzanine floor… Read more

New investments in the podcast

New investments in the podcast

Last week I received my AMP Scholarship in my bank account. I suddenly had money to spend on the podcast. I did a lot of research when I first started the podcast. I bought some things cheap and other things quality. I have a tendency to start new hobbies and buy… Read more

What does it mean to be a mother?

What does it mean to be a mother?

What does it mean to be a mother? Does it have a definition we all agree on? Is there a difference between being a mother and a parent? When Eva was born and her diagnoses started rolling in, I was desperate. This wasn’t the role I signed up for. A… Read more

Can I be a feminist and a special needs advocate at the same time?

Two days ago I wrote a piece for The Spinoff Parents. I had just seen an article about Sally Phillip’s documentary “A World Without Down Syndrome”. In the Guardian article she discusses her concerns over making the non invasive screening tests for Down Syndrome available through the NHS. After reading… Read more

Delivering good news – it feels good!

Delivering good news – it feels good!

There’s something odd that happens to you when tragedy strikes. You realise you need to disseminate the information to your family and friends. You know they need to know, and they would want to know, but part of you can’t bear to tell them because you know it brings them… Read more

A new episode out soon!

A new episode out soon!

  I have just spent the first weekend of my school holidays working on the next podcast episode. Episode 14 is due out on October 1st and will feature the very lovely Ashley Jones talking about her gorgeous daughter Victoria. I can’t wait to share this one. Ashley is one… Read more

Parents sue over birth defect – can we blame them?

A New Zealand couple living in Australia are suing the medical professionals who allegedly failed to identify the condition for $2.5 million in damages. Their daughter, Aria, who is now two years old was diagnosed with Aicardi Syndrome after an MRI scan revealed the condition. Aria has impaired vision, hearing loss, scoliosis,… Read more

Hekia Parata will have a lot to answer for

I am a high school teacher. The kids I teach are between 12 and 18 and the school I teach at often attracts students with extra learning needs like dyslexia, dyspraxia, Autism, anxiety and depression. We are seen as a school that does this sort of thing well, and not… Read more

AMP Scholarship – please vote for me!

Since I started the podcast I’ve invested quite a bit of money into it. I bought all my own equipment and pay monthly subscriptions for a number of online services to keep in running. I’ve done all this because this project means a huge amount to me. But gosh, wouldn’t… Read more

Radio NZ Interview

I did this today. I went on Radio NZ and talked about the podcast live on air. I talked about Eva, about parenting about relationships. I was nervous, but it was a fantastic experience. Thank you to RNZ for having me! Read more

We are a top resource for Special needs families!

I got a lovely email from Total Pediatric Therapy that The One in a Million Baby has been named in their list of best resources for parents of children with special needs. This just made my day. This is exactly why I’ve kept writing and why I started the podcast. Read more

Playing sliding doors

Playing sliding doors

It’s been 18 months since Eva died. Saying that number, 18 months feels cruel. She only lived to 10 months, and already she has been gone longer than she was here. To someone who meets me now, there’s no indication that I am Eva’s mother. No indication that I was… Read more

Ms. Harrari, is it you that gets to define quailty of life?

On August 6, The Sydney Morning Herald published a story entitled “Parenting an intellectually disabled child: life forever on duty” about Alex Brown and his mother Vanessa. Alex is a 22 year old man who has Sotos syndrome. He is non verbal and has an intellectual disability. He spends week days… Read more

10,000 downloads, a milestone worth celebrating

10,000 downloads, a milestone worth celebrating

I’ve had my eye on the goal of 10,000 podcast downloads for a while. It was oh so slowly approaching. And then with the release of the last episode, it somehow snuck up on me and I have, right now, 10,186 downloads. In the grand scheme of things, this is… Read more

We can’t just condemn

Satoshi Uematsu, 26, killed 19 people and injured another 26 in a centre for disabled people near Tokyo, Japan, this week. He did so under the premise that he wanted “to rid the world of disabled people”. In February he sent a letter to a politician outlining his plan. He… Read more

Meeting Chiara and Natalie

Meeting Chiara and Natalie

I am proud of the fact that my guests on the podcast are from all around the world. I want to show both the universality of our experiences and the differences. It does mean, however, that I will likely never meet most of my guests. After I talk to them… Read more

Privacy vs popularity – A response

I started writing about Eva before she was born. Back then I referred to her as “the Peanut”. I kept calling her that for a while after she was born in a slightly misguided effort to give her privacy. The reality was that my blog was not anonymous, so by… Read more

Invisibilia: The problem with the solution

Invisibilia is one of those podcasts which never fails to impress me. Every episode is beautiful, crafted, intelligent and interesting. Every episode leaves you thinking about some aspect of the world in a new way. This episode was no exception. In fact, it may be my favourite episode from either season.… Read more

What didn’t happen

What didn’t happen

When Eva died, she had so many big things coming up. She was getting her hips and eye operated on. She was going to get a G-tube placed so she could finally have the tape off her face and the NG tube out of her nose. She was going to… Read more

Episode 10 coming soon!

In May I got prolific with the podcast and put out two in a month. This month, has been less productive. I haven’t managed to record until the weekend just been and I’ve watched the 1st of July sneak closer and closer with no material. I realised something, it’s hard… Read more

Washington Post’s Top Parenting Podcasts – we’re in there!

Washington Post’s Top Parenting Podcasts – we’re in there!

I didn’t have my phone on me yesterday. The usual vibrations and alerts didn’t reach me. During period five, when my year 13s were working hard on their writing, I checked my personal email. It was full of alerts that people were tagging me in posts on Facebook. I wondered… Read more

No excuses: Imagine it

No excuses: Imagine it

“I can’t imagine what you are going through…” It’s a phrase that every parent who has lost a child has heard multiple times. It’s meant well. The speaker wants to let the griever know that they recognise the magnitude of this loss. They’re trying to validate the griever’s feelings by… Read more

Feature in the SOFT UK newsletter

Feature in the SOFT UK newsletter

A few weeks ago I was contacted by a representative from SOFT UK, which is a charity that provides information and support to families affected by trisomy 13 (Patau’s syndrome), trisomy 18 (Edwards’ syndrome) and related conditions. They provide support through the many stages families may find themselves in from… Read more

I’m in the Huffington Post!

I am pretty excited. My last blog post on how we talk about disability and special needs is on The Huffington Post Australia! It’s the first piece they have published of mine, and I hope there will be many more. http://www.huffingtonpost.com.au/tessa-prebble/we-need-to-change-the-way-we-talk-about-disability/?utm_hp_ref=blog Read more

Words matter

In the New Zealand media, a city mayor recently came forward admitting he had been wrong. He said he had been dismissive of the needs of Maori. He called himself a recovering racist. He asked for the people of New Zealand to think about their own actions. Andrew Judd did something… Read more

Medical cannabis: Anecdotes may not be enough, but they have power

Every year that I have been a teacher I have had my senior students write opinion pieces. I have told them to write about something they feel strongly about. It can be humorous or serious as long as it is writing in that style. They need to use language features;… Read more

Singing in the shower

Singing in the shower

Last night I was talking to my boyfriend about the things we do when no one else is around. He admitted that he sings in the shower – I doubt I’ll ever get to hear it, but it made me smile. He asked if I did, and when I thought… Read more

Mother’s Day – in recognition of a special group

Mother’s Day – in recognition of a special group

It’s Mother’s Day in New Zealand tomorrow. Last year I wrote a sort of ode to the other mothers like me who find Mother’s Day harder than most. I wanted to recognise all of those mothers who weren’t necessarily feeling like the mother they were that day. Perhaps, like me,… Read more

It’s the world that needs to change

I don’t always watch these kinds of videos. But someone I trust shared this one so I watched it. As I was watching it I started crying thinking of the video I don’t get to make of Eva reaching some of those milestones. By the end I was nodding and… Read more

Let’s show her what it really looks like

Since posting my letter to Education Minister Hekia Parata, I have had a brain wave. Someone mentioned I should start a petition and I like that idea, but then I got another comment. A mother told me about her two kids who both have special and extra needs. She said… Read more

An open letter to Hekia Parata

Dear Ms. Parata, You’re reviewing and overhauling the special needs education system right now. You’ve said you won’t be increasing the $590 million budget at this time, and instead will be focusing on efficiency and simplification. If you were a real estate agent that’s the equivalent of calling a tiny,… Read more

Happy 2nd birthday, Eva

Happy 2nd birthday, Eva

What does Eva’s birthday mean to me? It means a day when I can think about who she was. I can remember her smile and her smell. I can remember her grunts of determination as she rolled herself across the floor. I can think of the way her whole body… Read more

Counting backwards

Counting backwards

Holidays seem to make me count backwards. Where was I last year? The year before? I did this before Eva, but now it feels even more pressing. Easter is no different. Last year on Easter I drove to the Hawkes Bay for a holiday with friends. The holiday coincided with… Read more

Sign the petition – give Lily a new heart

Sign the petition – give Lily a new heart

I was listening to some people talk about language the other day. They were discussing racial slurs and slurs aimed at the special needs community. They seemed to agree that racial slurs were not ok under any circumstances, but when it came to special needs slurs (we all know which… Read more

I have a voice and I will roar

I have a voice and I will roar

There was a feeling that I don’t think I ever felt before Eva was born that I have come to know now. Before Eva was born I felt twitchy, anxious, like I wasn’t doing enough with my life. I always imagined that I would have written a novel by the… Read more