In the lead up to World Down Syndrome Day on 21 March, we spoke with Sheryl, a mother of seven, including sons Joseph, 21, and Ben, 19, who live with Down Syndrome.
Joseph and Ben’s National Disability Insurance Scheme (NDIS) funding is plan managed by My Plan Manager and we asked Sheryl about their journey through the NDIS and their plans for the future.
We also invited her to share some of her ‘proud Mum’ moments, her advice to other parents of children with disability, and her thoughts on what inclusion really means.
Sheryl: My husband and I have seven children and Joseph and Ben are the youngest. Our eldest daughter is 33 in a couple of weeks, and Ben, the youngest, is 19. It’s been good for Joseph and Ben to be part of a big family because, growing up, they’ve had to be flexible and have always been part of everything we’ve done. We used to go camping for holidays and their brothers and sisters have always included Joseph and Ben in their lives and friendships.
Sheryl: As pre-schoolers there were supports available, and fairly soon after Joseph and Ben were born, we were involved with the Down Syndrome Society’s early intervention groups - which were fantastic. We also accessed supports through Disability SA, which, back in those days, was called the Intellectual Disability Services Council.
We were able to access speech therapy, physiotherapy, and occupational therapy, which was very good in the early years, but then we found that once the boys were at school, those services weren’t readily available, and didn’t really exist. At one stage we received funding for speech therapy from Foundation 21 (a non-profit organisation which seeks to enhance and support existing services and to raise the public’s awareness of the positive contributions of individuals with Down Syndrome), and later we tried to afford therapy through the Enhanced Primary Care Plan (Medicare) but we still had to pay the gap. It made it hard to get support, particularly if we didn’t have the finances.
Once the NDIS came in, it was fantastic to be able to access supports again, and then to find support workers for Joseph and Ben as they grew older. It’s been tremendous really – they get all this extra help that’s enabled them to make much faster progress and develop in a lot of areas. It takes a load off us, particularly as our other children have grown up, left home, and lead busy lives.
The NDIS has created a different kind of stress in coordinating everything and keeping track of appointments – however, compared to what it was like before the NDIS, this is a big positive. The good thing is, Joseph and Ben can often work together with one support worker, even though they’re very different.
Sheryl: When we were agency managed it restricted which providers we could use, and we couldn’t use providers that weren’t NDIS-registered. We still find we have to check over invoices, but we don’t actually pay them, and to know that someone else is keeping an eye on things too is really helpful.
Sheryl: One of the big things with Down Syndrome is it seems to affect so many areas of Joseph and Ben’s lives. There are a lot of conditions that are more common for those living with Down Syndrome, like hypothyroidism, diabetes, hearing, sight and dental issues and low muscle tone. Ben was born with a heart condition and has had open heart surgery three times since he was 10 weeks old. That is where you need support!
Apart from having the support of immediate family, we are part of a local church group where people have turned up with meals during times when we've been at the hospital, and there are people we can ring up, talk to, and pray with – having that support is fantastic. We’ve been able to meet other parents, share our story and hear theirs through early intervention groups, and they may not be exactly the same, but there’s similarity and understanding.
Sheryl: We were given some advice earlier in the picture to follow mainstream education. Funnily enough, in the school system the teachers were fantastic, but disability coordinators could be negative and unhelpful, and had very low expectations. I learned from a workshop I attended that a local school had to accept Joseph and Ben, whereas the principal gave the impression that they had to reach a certain standard of learning before they could attend. If I hadn’t gone to that workshop, I wouldn’t have known this, and I would have gone down the route of special education. That’s why it’s important to have a good network and to get the right information.
There was a time when Joseph - who has an element of autism as well as Down Syndrome - had behavioural issues, and things weren’t looking great for him in primary school. We applied for a special school and prayed to God to tell us what to do, but at the time there were no vacancies, so we took that as a sign and stuck to mainstream education. It was such a great joy to see him graduate from Year 12 and even get a graduation medal for academic excellence in modified SACE. There were times over the years when things would go badly, and he would get suspended, and public opinion of putting him into mainstream education was against us - but we're so glad we persisted.
Ben is very different, but also had some bumps in the road when he was in Year 7. However, he went right through mainstream high school, got his modified SACE, made some good friends, and really enjoyed it.
Sheryl: There is a stereotype that people with Down Syndrome are always happy. Joseph and Ben get angry and sad, just like anyone else, but they do have a joy in life that’s refreshing. They’re more prepared to enjoy life and what a lot of people don’t realise is they’re not sorry for themselves. They don’t ‘suffer with’ Down Syndrome, and they don’t see it as a hindrance.
There is a concept that having students with Down Syndrome in a classroom can have a negative effect on other students, but over the years parents have told me they’re so glad their child had Joseph or Ben in their class because they learnt a lot and were less afraid when they saw adults with Down Syndrome.
Sheryl: Don’t compare yourself or your children to other people. I would look at other young people with Down Syndrome and see how they were succeeding, only to find out that their parents were looking and comparing too.
Each person is different and has different skills, strengths, and weaknesses.
Sheryl: Joseph has a job working at an aged care facility and we are very proud. He’s working 15 hours a week manning the kitchen, washing dishes, and setting trays. Prior to this, he was doing junk mail deliveries – or catalogue deliveries as he prefers to call it. It’s a lot of work for little money, but it trained him to be persistent and organised. He also volunteered delivering food at Meals on Wheels, where his support worker was the driver, which gave him good social experience to set him up for his current job.
Joseph and Ben are very different, and whilst Joseph wants to stay at home, Ben wants to move out eventually. We are blessed to have two blocks of land and would like to use the block next door to build them a house each. We’ve always wanted to prepare for their future to make sure they are stable and have supports in place and would like to see them both working and married and living independently in the community.
Sheryl: A big ‘proud Mum’ moment was when Joseph got a medal at school for academic excellence. There was another time when they both did swimming lessons and indoor rowing, and Joseph got a trophy for his improvement in those areas. Joseph was terrified of water, and it took many years of persistence to get him to swim. As a parent, you sometimes think ‘Why am I putting my kids through this?’, but it was well worth persisting and now it’s something he can do and enjoy.
It was the same with bike riding - he couldn’t cope with normal training wheels, so we went through a process of using a tricycle, then big stabilisers, then we went to no pedals, until finally he could ride a bike. That was a very big moment too.
Ben was really terrified of medical procedures after having open heart surgery, and because he was going to have to have another operation at 13, we spent a year working with an occupational therapist to help him cope. Now he is no longer scared, and he can do his own injections for his diabetes. We spent a long time overcoming that.
Sheryl: They have a speech therapist. Joseph is very good with articulation and Ben has struggled a lot with his speech - he has mild to moderate hearing loss and has had to work at his language skills. We also access occupational therapy, counselling, exercise physiology, School Leaver Employment Supports program for Ben and Disability Employment Services for Joseph.
We have very good support workers who work with the boys on their physical fitness and encourage them to be active. They’re at the gym three times a week, plus they do swimming, are in a church basketball team, and have done junk mail deliveries. Mentoring All Men is a great support that encourages them to do physical activity to improve muscle tone and manage Ben’s diabetes.
Sheryl: Look into the future and think about the big goals that you want your children to achieve, then work backwards and create a plan from that. We want Joseph and Ben to live independently and need less support, so we have always kept that goal in mind and worked towards it.
Sheryl: To enjoy the small things and really celebrate the little successes.
Sheryl: Inclusion means being given equal opportunity and being allowed to do things alongside, and with, people in the community. When Joseph and Ben first wanted to play basketball, people would tell them to join a disability team - but they wanted to play with their friends and the people they knew. Inclusion is being able to be part of a local community, a local club, a local school.
I’ve had to fight to have that inclusion in some places more than others, and there have been times where they weren’t considered for something because they have Down Syndrome.
When Joseph left school, he wanted to keep doing woodwork and the first men’s shed we approached didn’t accept him. They just couldn’t envisage that he was capable of doing the activities there. Then, we found another men’s shed further away that was more than happy to have him there. The silver lining of this is you find incredible, accepting people in the community.
To learn more about Joseph and Ben, and how My Plan Manager is helping them to manage their NDIS plans, click here to watch a quick video: https://www.youtube.com/watch?v=vgYVXiKA7YI.
