Kabuki Syndrome

Shanika’s Achievements – Volunteering with Kabuki Syndrome

As NDIS Plan Managers we’re lucky enough to meet and interact with extraordinary people on a daily basis whether they’re Participants or providers there’s always a great story to hear. Often those who have stories to tell give us the honour of sharing it with the world, one of whom is Kirsty Ah Matt, mother of Shanika Ah Matt-Lovett, a “happy, friendly, positive, confident, chilled young lady” from Adelaide who lives her life with Kabuki Syndrome.

Shanika has had a year filled with achievements that we’re incredibly happy to have spoken with Kirsty about…

Can you give us some insight into Shanika’s experience with Kabuki Syndrome and what it means for her everyday life?

She was diagnosed about the age of 6 after being labelled with “Global Developmental Delay” basically from birth. I had mixed emotions when she was first diagnosed. It was a relief in one way to finally have a name for it, but then it was a slap in the face that this was real and wasn’t going away.

She’s only mild. There are others much worse than her. Her main things are:

Short in stature, speech, intellectual disability, hearing, her teeth, low muscle tone. Because of her issues she gets tired easily as it’s an effort to do most things. You never hear her complain though. She is a very happy, friendly, positive, confident, chilled young lady, who has an awesome memory, loves socialising, social media and loves life in general.

Shanika was in a mainstream school in a special class from Year 2. She passed her SACE. Shanika loved school and hardly missed a day, except for her appointments and if she was sick, which was very seldom. Since leaving school, it has been hard for Shanika to get a job. She was doing a hospitality course 2 days a week. Besides that she was in her room, on her phone, bored. Thankfully, she’s just started at CBS, Beyond doing 3 days a week. Hopefully this will help in getting a paid job. Her ideal job would be at the Port Club.

I don’t treat Shanika any different from my other children, and Shanika doesn’t see herself as having special needs.

Shanika made the Junior Special Olympics SA team for swimming and basketball in 2012. And won a gold and silver medal. She is currently waiting for a knee operation, as her knee dislocates which is due to her syndrome.

How long have you been an NDIS Participant?
Since February 2019

We understand Shanika was looking to volunteer with St Vincent De Paul earlier this year – can you tell us how this came about and the reaction that greeted you when initially you enquired with them?

My lead-lighting teacher volunteers there and suggested it would be good for Shanika. Sharyn and Lucy, the store manager, asked the area manager, Trudy. Trudy said that they weren’t accepting any people with special needs. This made me very angry and upset. As Shanika wanted to volunteer and was denied. After Lucy’s persistence, Trudy invited us in for an interview. She fell in love with Shanika and said she could start the following week. Shanika also had to get a police clearance to be accepted as a volunteer.

As a volunteer, what do Shanika’s duties involve and in what location(s) does she volunteer?

At the interview, Trudy said she’d be helping with stock for the first few weeks. Well the second day Shanika was there, she was on the register AND balanced. And has been there ever since. She helps with the window display as well as shoes, and whatever else she is asked to do. Shanika is at the Semaphore Vinnies. Pop in on a Tuesday and she’ll serve you with a greeting and a smile.

We hear congratulations are in order!

Ironically, it was Trudy, who admitted how bad she felt about initially saying no to Shanika volunteering, who nominated Shanika for the award. Trudy rang me to tell me. It was a surprise to Shanika.

Shanika attended a training session for all Vinnies stores in SA. There she was presented with her award. I didn’t attend but Trudy sent me photos. I then text Shanika to ring me when she had a break. Shanika rang and I asked how the morning was going and what she’s been doing. Her reply was “Nothing much.” I asked “Anything happen to you?” And finally she told me she got the award. Very relaxed. But Trudy told me that she couldn’t wipe the smile off her face.

I’m extremely proud of Shanika and her receiving this award. She’s only been there 8 months and has made such an impact and everyone loves her, both staff and customers. I was at my youngest son’s kindy and this lady made a beeline for Shanika. The lady was complimenting Shanika on how helpful she was, very happy and friendly when she went to the store.

Shanika felt very good about receiving the award and has shown it to family and friends. I personally don’t think Shanika realises what a big deal it is.

Kabuki Syndrome

How has the volunteer work effected Shanika’s lifestyle?

I think it’s helped her self-esteem. She really likes the people she works with and the customers. She finds it interesting and never boring as there is too much to do. It’s helped her realise that this is the sort of job she likes in retail and customer service. She gets a sense of achievement when she balances and they reach their target.

Do you have any advice for other Participants or carers looking to find meaningful employment or volunteer work of their own to engage in?

It’s quite hard. I know Shanika would be an awesome employee and good in any job but she just needs an opportunity. My suggestion is to be persistent and don’t take no as an answer. And just continue to ask family, friends or anyone if they know of any positions available. You never know who might be able to assist. But also, be prepared to be let down, angry and upset. I know how much this volunteer position has meant to Shanika. I can’t wait till the day she actually gets paid for her work. Shanika definitely deserves it. The employer and business will not be disappointed. Shanika would be an asset to any business.

What has your experience been like as an NDSP Plan Managed NDIS Participant and do you have any specific feedback?

Being new to NDIS it’s been good to be plan managed by NDSP. It’s easy. All you have to do is tell the provider your plan managed by NDSP and they deal with the rest.

I am kept up to date with how much of Shanika’s plan is left and what we have spent. Plus any relevant news I am emailed as well. Signing up with NDSP was simple too. Shanika and I had a meeting with a very friendly lady who made us feel comfortable and was very helpful.

The boss is very friendly and approachable and I think that filters down to the staff. I highly recommend NDSP.


NDSP is a NDIS registered provider specialising in NDIS Plan Management. If you are a NDIS Participant looking for the right Plan Manager, CLICK HERE to get in touch with our friendly team today.


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