Rach Hudson and Charlotte Hartstone met when their daughters were young, right before running a treacherous Waitetuna School cross country with them. Shortly after that they started a support group for parents of special needs children in Whāingaroa. Cameron (15) and Harlow (13) are currently attending Salisbury School in Nelson, the only specialist school for girls in New Zealand. I sat down with Rach and Charlotte to talk about why they chose Salisbury, and eventually Harlow and Cameron joined in to tell us what they think of it too.
Why did you make the choice to send the girls down to Salisbury for their education?
Rach: Harlow has a tiny dent out of the paternal arm in the 15th chromosome which is called Prader Willie Syndrome. When she was younger, I finally got out of denial and figured out that I needed support, and so we attended a family camp run by the Prader Willie Association in NZ. It was there that I found out about Salisbury. At that time, I thought I could never send my daughter so far away. Unbeknownst to me, things would be very difficult for Harlow at school because she wasn’t eligible for ORS (special needs education funding) and as she got older the gap between her and her peers was widening. I had to take my mum heart away and look at what was the best for Harlow. Sometimes it feels like a cruel to be kind scenario; mum guilt with a special needs child can feel like your heart just getting ripped apart. But we can’t wrap her up forever and she is capable of living a full life, and Salisbury can help her prepare for that.
Charlotte: Cameron has a large genetic deletion on the long arm of chromosome 2, it has no name, and we only know of one other person who has it in the UK. I would have never contemplated Salisbury if it weren’t for Harlow starting there first. The girls have been friends since they were young and seeing Harlow do so well there made it a lot easier for us to make the decision. The whole point of Salisbury is getting the girls as ready as they can be for the next step, whatever that looks like for them; that’s why the age bracket is 8 years to 15 years old. You have to start before you turn 15, and the girls only get funded for two years – that’s the way the government has made it now. They have individual goals they work on; some of them can be as simple as road safety or money skills. You don’t have the ability to learn those things at mainstream schools. We know that they are safe and looked after down there.
How hard has it been to get funding for Harlow and Cameron’s education?
Rach: I’ve struggled so much with Harlow, getting her what she needs has been a long battle. She doesn’t get ORS funding but she qualified for ‘high health needs’ funding and we were very fortunate when she started school that we chose Waitetuna. They were so openly supportive of our situation as she was funded for only 30-60 minutes a day of teacher aid support, and they did as much as they could to privately fund extra minutes. They also appointed a fellow mum who lived just up the road. Jess was a superstar as Harlow’s support. But we also knew that it would be very hard going forward. I have had to be strong and pushy and luckily that’s what I’m good at. Getting into Salisbury is like winning the lottery. Harlow started at the beginning of 2022. You only get two years allocated at Salisbury so she will finish up at the end of this year.
Charlotte: With Cameron, I’m lucky to have had a really positive experience with her funding. We have also had a lot of people advocate for us over the years. Cameron had been at Te Mata School since she was 6; it was the best school for a special needs kid. They welcomed us with open arms, and she was celebrated at that school.
What progress have you seen the girls make in their time there?
Rach: Oh so much! The first time she came back after a really good term, she was able to control her outbursts, especially around her siblings. Louis doesn’t even think Harlow has special needs, she’s just his big sister, but she came back and was communicating with him, “Please stop doing that, I’m going to get upset.” She is much easier than my very able-bodied sons! She was cooking meals and cleaning, and wanting responsibilities. We’ve noticed such a maturity in being able to self manage. I find it so intriguing going through this and watching how she’s dealing with it all. It doesn’t mean it’s all solved but it’s amazing to see change in a child who has been told that her behaviour is due to her special needs when actually no, some of those things can be curbed in the right environment. The school has a lot of positive goals for her and there is wrap-around support where you are able to implement these goals. Seeing what she is capable of without me right next to her is huge. It’s so comforting to see how happy they can be without us right there with them.
Charlotte: Cameron started at the beginning of this year and she’s loving it. She’s made some lovely connections with the girls down there! She even had her first sleepover with a friend in the holidays. She is doing so much more for herself; she strips her bed and does her laundry, she vacuums and does chores. I’ve always done that all for her, but it’s so amazing to see her do it. Cutting the strings away from me as a mother has been hard. I used to not be able to leave the house without her because she had separation anxiety. Now, every day they post stories of what the girls are doing and it’s so comforting to see a big smile on her face in every photo. I know she is doing things she enjoys with people she likes to be around. The staff there are pretty magical.
Harlow and Cameron, what do you love most about being at Salisbury?
Cameron: Horse riding is my favourite!
Harlow: I like doing art and no schoolwork. At our school we just make learning fun. Basketball is my favourite but it’s quite hard. We go swimming, we go to the beach, and we go to Nature Land. There are monkeys, porcupines, meerkats, and llamas. If I get tired or if it feels too hard for me, I can go for a nap and then I ask them if they can bring the lesson to me when I have more energy. They understand. I don’t feel so different.
If you are interested in forming another support group for parents of special needs and high needs children in Whāingaroa, please contact Rach Hudson on FB Messenger or email her at rachhudsonbiddy@gmail.com.
