Emma Siulepa just wants better understanding for her autistic son Justin. Photo/Stephen Parker
Rotorua's Emma Siulepa says all her 17-year-old son Justin wants is to be acknowledged, while she just wants him to be respected.
"My son is challenging and inspiring and loved by all his family, but he is laughed at and mocked and glanced at by people on the streets or in stores who have no idea what autism is."
Justin has severe autism. It's a neurological disorder, so he looks just like others his own age.
"Society sees this handsome tall-looking guy that plays up in public and has hissy fits, that he's spoilt," Ms Siulepa said.
"That's the perception of people who do not know what autism is, and how it affects the family."
Ms Siulepa said she lived on perseverance and patience. The judgment of people in public was one of the hardest parts of raising an autistic child, she said.
"Sometimes Justin has meltdowns, he is frustrated and cannot verbalise it. Therefore he bangs his head on the floor and we have to prevent him injuring himself by putting pillows on the floor under his head. Ten minutes later, he's flapping his hands, jumping up and down on his toes, letting out a cheery happy 'woo hoo'."
Like with any child, Ms Siulepa said the key is understanding his wants and needs, but with Justin that can be tricky.
"He is non-verbal, so we learn sign language, or Justin mumbles the first syllable of words, such as 'cooorf' is cornflakes," she said.
"The barrier is the communication, however, if you study and observe Justin closely, you will learn to adapt and understand him more.
"The saddest thing for me and my family is hearing and seeing my son sobbing and cooing, tears streaming down his face, and we don't know why. He might be recalling a sad incident or he could be predicting a sad event in the future, it breaks my heart."
For the Siulepa family looking after Justin is a 24-hour-a-day job.
"Sleeping patterns for Justin are unpredictable," she said.
"We endure sleepless nights, when he stays up until the wee hours of the morning like 3am, then it's only a few hours' sleep for the both of us.
"My partner and I work as a team, we take turns staying up with Justin, then he's up again around 6am so the last one to sleep and the first one up."
Ms Siulepa said Justin's safety was paramount, because he had no sense of danger.
"He has no sense of road safety, so we are right by his side or holding his hand if we are walking to the shop," she said.
"We have locks on the pantry, the freezer, keypad lock on the door to the kitchen, a safety lock on the front door to prevent him from going outside during the night, we have a number lock on the gate and a security alarm as well."
Despite how difficult it can be Ms Siulepa said she was blessed to have Justin in her life.
"He's taught us a lot about his autism, and continues to do so."
A day in the life of a Rotorua family living with two high-functioning autistic children
Fransisca Fitzell describes an average day with her 11-year-old daughter and 9-year-old son.
4am-5.30am
This is when the kids wake up. I always have their medication and a bottle of water on my bedside ready to go.
6.30am-7am
They have Crunchy Clusters for breakfast, because we keep their diet very low in sugar. This morning my little girl had a sore arm, which meant she was acting up. Her brother got so worked up that he just shut down.
7.50am
I have to calm them down, and usually my daughter will go for a shower. We have to do things in a slow organised way, we can't zip around doing things because it creates anxiety for them. If she isn't ready in time, it leads to absolute meltdown.
8am-9am
My daughter has to be dropped off at school before the bulk of school gets there. Then the little one is dropped off, and I have to stay with him until the bell goes because there's no teachers around and he needs constant supervision.
9am-12pm
This morning I only got to go home for a little while. I had a meeting with Autism New Zealand and Parent 2 Parent, trying to arrange getting a group set up for autistic kids.
12.30pm
I collect my son from school. He only does half days because it triggers his anxiety so much that he gets physically unwell. My rock, my husband comes home from work for his break. I'm blessed with this as some ASD (autism spectrum disorder) parents are on their own and family is one of our most valuable supports.
1pm
We go home via the supermarket and then I have an hour and a half when he won't let me leave his side. I spend this time trying to organise dinner which has to be ready by the time my daughter gets home.
Whatever time I have left we will play a game, talk about something or even just watch the clouds go by. We are learning about emotions and this is a constant in my home as my children don't recognise facial expressions so we tell jokes, we pull faces and we talk a lot about funny feelings in our tummy.
3pm
We are back in the car to collect my daughter from school, and because her arm was still sore it meant a trip to the GP.
We are lucky to have found a good GP, they understand that there's a lot of things which can trigger a meltdown at any point, so we now have the same nurse every time.
3.30pm
It turns out that she has been overdoing it in PE class.
I can't describe how upset this makes me because she doesn't understand to stop when it's hurting her. Meanwhile my son is in overload because we've broken routine.
4pm
This is when they have their night medication, and my little boy who has amazing ball skills has to get ready for basketball.
Our psychologist from IDEAL services suggested we try Special Olympics. We went along and for the first time ever he fits. He plays and engages and plays an awesome game with some super awesome people with all kinds of special needs.
4.30pm
Because we're out of routine both children are having meltdowns. It begins with them "stimming", this is shaking their hands beside themselves and rocking.
My daughter has now tried to kick me, hit me and I have had to slide a pillow under her head as she starts head butting the floor.
After 10 minutes she hugs me to say sorry, and we move on. This is not a naughty child, this is an ASD child whose goal is not to hurt you, but that can't express her pain.
5pm
Dad pulls up in his truck and we are all off. We don't get a lot of time as a couple so I am trying to ask how work was between meltdowns.
It's important to bring our daughter along so we can desensitise them to the things which can overload them. My children want to have friends and to socialise and these are necessary steps to helping them reach that goal. Basketball is an hour of fun for my little boy.
6pm
We head home for more food and showers, then bed time. My daughter is usually so exhausted she's asleep within 10 minutes of going to bed.
8pm
My little boy is still overloaded and stimming, talking and moving and talking. It has taken an hour to settle him. Night-time meltdowns are the worst.
9pm
We go to bed, ready for the 4am wake-up again. Tomorrow will be another day, with a glance at my diary there's already three appointments booked, but we will be there. We will move on, we will laugh and cry and share in this wonderful life that is ASD.
Support for parents
Autism New Zealand Inc provides support, resources and information to people living with autism; their families and caregivers, across New Zealand.
Very little was known about autism spectrum disorders when Autism New Zealand was founded in 1969 and only nine families were represented at the first meeting.
Today there are more than 6300 members and 16 branches, including Rotorua.
The Rotorua branch holds a coffee group every month for parents with autistic children.
One in every 66 people across New Zealand suffer from an autism spectrum disorder.
"Don't just think it's bad parenting, these kids come with a lot of challenges and these parents are doing the best they can to raise their children to their full potential," Autism New Zealand chief executive Dane Dougan said.
"Parents in some cases are too scared to leave the house. We need to create an environment where it's more comfortable."
For further support or information, email rotorua@autismnz.org.nz.
How common is autism?
One person in 66 has an autism spectrum disorder or one child in every three school classrooms.
It affects about 65,000 people in New Zealand.
"Classic" autism affects four times as many boys as girls.
Asperger's syndrome affects nine times as many boys as girls.
It is found among all races, nationalities and social classes.
- Autism New Zealand
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