Congratulations Henry Gregg!

Henry Gregg’s milestones might seem quite normal. He will finish primary school soon and then head off to a high school where he can pursue an interest in cooking. He…

Henry Gregg’s milestones might seem quite normal. He will finish primary school soon and then head off to a high school where he can pursue an interest in cooking. He will catch the bus by himself. He plays 12th grade soccer for a club.
Yet Henry has autism and when he started school, he didn’t talk or use the toilet and meltdowns weren’t uncommon.

Henry’s mum Jo Gregg credits good early intervention and schooling with enabling his remarkable progress. “It wouldn’t have been possible without mainstreaming.” Here, Jo shares her Top Tips for parents and teachers on how to support high needs students to reach their full potential.

1. Find out everything

I took Henry for a hearing test as a toddler because he didn’t respond to my voice. It took months to get a diagnosis [free special education services are overwhelmed by demand] but Henry did get some hours with a speech-language therapist almost straight away so we could learn picture exchanges and sign language.

Those early years are critical. There are quite a few free programmes and services. Don’t be shy or ashamed. Ask questions and talk to everyone” teachers, Ministry of Education (MoE), Ministry of Social Development, IHC, Plunket, health practitioners, Work and Income. One person might not tell you everything that you’re entitled to. Keep asking.

2. They don’t˜pick it up’

Autistic kids need to be taught absolutely everything. There’s no learning by osmosis.

3. Find parents with children in the same boat

I went to a support group early on and was almost overwhelmed by the gloomy stories. But I met another parent and we became friends. You need other parents and children to hang out with who “get” your kid. They understand when your child knocks their child over. The same goes for teachers” talk to others who teach special needs students.

4. Become strategic

Special education advisors aren’t allowed to give recommendations on particular early childcare services or schools or developmental programmes. You’ll need to work out what’s best for your child.

5. Beware snake oil merchants

Some people are out there selling magic bullet solutions” they can be really expensive. Some might help a bit.

5. Take what you can get

Sometimes by the time the specialist arrived to help with something, we’d fixed that problem” once we used the behavioural specialist person to help with toilet training instead. When Henry was older, a couple of teenagers who had been at school with Henry did their community service for the Duke of Edinburgh programme by playing soccer and just hanging out with Henry after school for an hour a week.

6. When it all goes belly up

You have to have a break. I separated from Henry’s dad when Henry was three and his sister five and we moved to rental housing. I asked” too politely ­– for respite care and was allocated five days a year. When things really went belly up, I was referred to a programme called Strengthening Families. Our paediatrician, speech language therapist, MoE person, teacher and a social worker met and they were able to get us extra respite care. Sometimes it is about being the squeaky wheel.

7. Choose your teachers

I chose a small school for Henry that advertised itself as A Country School in the City. I looked at the ERO reports and saw this school had a good report for special needs. ERO is a good place to start too, for early childhood centres. You’re looking for a receptive principal or head teacher ­– someone who will talk to you, someone who is open to ideas and suggestions. Henry’s school sent all their teachers on a Sue Larkey course to learn more about autism. That helped.

8. Find the right teacher aide

It can be really hard to find a qualified teacher aide who is going to stick around, because the money is rubbish. That’s another advantage of going to a school with experience of special need students” they are more likely to have a pool of knowledgeable teacher aides they can draw on.

10. Learn the art of form filling

Before Henry was eight he “learned to read”” he could sound out the letters and words, although he had no idea what they meant. So he lost his ORS funding” I was in a complete panic because I knew he would go backwards really fast without a teacher aide. We had to reapply making it really clear all the things that Henry couldn’t do. It pays to have someone with experience help you fill out the forms. Teachers and principals need to ask for advice in completing the forms to get the extra resources and facilities that special education kids need.

9. Make sure other children and parents know what’s going on

Henry’s sister Olivia stood up in assembly and gave a talk, “My brother has autism.” I was so proud and it meant all the kids and some of the parents knew about autism and what to expect. I joined the school’s “Friends” group so I could get to know other parents and they could get to know us. For Henry’s first few years at school, I had a flexible job so I could run up to school when he had a meltdown. It could take a while for people to get to know his cues.

10. A buddy system

The school set up a rostered buddy system so another child was with Henry at morning tea and lunch. It can help if the school puts in an incentive” but sometimes kids were competing to be the buddy. For two or three years, Henry had a bus buddy” they caught the bus together into town so Henry could come into my work. Now he goes on his own.

11. Learning doesn’t happen in a straight line

Henry used to only eat five or six crunchy foods. We tried a programme at the hospital to get to him to try new foods. We tried lots of things. Then he started watching Masterchef with Olivia. One day when he was about 10 we had the idea to put some different foods on a plate and for Henry to be the judge” “Now you say Henry which is the best”. And he started munching on them. From there, he started cooking. Now he’s interested in working in hospitality.

11. Sport is great

Henry joined the class soccer team. I spent the first two or three years running up and down the pitch with him, saying, “This way Henry. On the pitch Henry.” Now I watch from the side while he plays for a club. He’s turned into a good little defender.

12. Medication

Don’t be afraid to try medication and don’t be afraid to not try medication. We got through without. But it’s an individual choice.

13. Other kids don’t have to be like him

I used to want Olivia to talk to Henry like I did” slow and simple. But she refused. Looking back, I see it was a good thing. He had to come up to her level, and it pushed him.

14. One for the politicians

Special education and teacher aide funding needs to be ring-fenced. And don’t make it so darn hard to get this funding. As parents, principals, teachers and MoE support workers, we turn ourselves inside out trying to get adequate funding to support our special kids. If you could look further ahead and see the money you invest in mainstreaming has now ensured Henry will become a tax-paying adult you’ll realise you’ve made a great investment.