“When they walk in here and they go (exhale), I can just be who I am.” 

One is reminded of Abraham Maslow’s Hierarchy of Needs, to love and belong. To be accepted. To be given love and to hold it in a sacred place for others. When deprived of these fundamental components of life, of living, different shades of perniciousness can come to overshadow one’s own light- and ability to move with lightness through the world.

Several parents at a local PlayConnect+ group have felt a grief not dissimilar to this dimming, when raising their neurodiverse children in neurotypical environments.

One father describes a scene: a group of children and families eating fish and chips while talking and playing with one another on a picnic rug. His own two children were busily running around elsewhere. There was a distance drawn out between his family and that of the other families present. He felt it.

Another parent describes not feeling welcome at a neurotypical playgroup she attended with her children. Now she only comes to this PlayConnect+ group.

“Just the social judgment was incredible,” reflects PlayConnect+ facilitator Cheryl on her own lived experience.

“It is just so hard to be a parent of a child with a disability. Sometimes it just breaks your heart to see them never invited to birthday parties, or you see them be bullied in the school ground, or your child running after other children because he wants to play with them, they are running away from him. You see so many things that break your heart and you experience that.”

Cheryl has taken her own awareness, her insight, and turned it into a gift of illumination- of understanding. It is a particular felt knowledge that allows her to celebrate and commiserate, to share, to heal, to grow, to belong, to be.

“It is just a beautiful job,” she said with genuine warmth.

“It is great to be a part of the community like this and because we are at a grassroots level. Often people come and they haven’t got a diagnosis and they are going through the whole process of it and you see the grieving and the loss and the whole processes that they go through.”

Cheryl jokes that she gets paid to play, to be with families, to watch and support their child as they develop. What she is describing is a reliable village, which has a range of carers who look out for the whole group.

“It is powerful because most carers, most parents, don’t look after themselves and they go, I just don’t have any time, and they don’t always necessarily have the support system where they can actually be apart from their children. Some people are single parents as well, so it just gives them some inner strength.”

Cheryl talks about her positive use of language and affirmation, again aware of the benefits this extends, particularly if parents are caught in a daily cycle of care and the inner challenges that entails. She tells them that they are an amazing parent, she tells them what a fantastic job they do, she reminds them to look after themselves.

“I said looking after yourself is just so important. If you are not well, then your whole family is not well and who is going to cope.”

“I have had a parent on the ground just so unwell in the group and just so sick and I had to call her husband to come and get her. She was just exhausted and her body was shutting down in different ways so it really is just to give them a snippet of some alone time and inner strength and to have thoughts about something that feels beautiful, to look around and see things that are beautiful and eat things that are beautiful.”

During Carers Week, with the support of a grant from Carers Victoria, Cheryl created a serene space for the parents. Just off the play area, behind what looks like an office door is a welcoming room for one. There is soft lighting, aromatic candles, fruits, snacks, books, rose petals scattered and a foot spa bubbling away. Cheryl has selected a range of fragrant gifts, oil diffusers and incense sticks for each person to take home to evoke a physical reminder of the parents time at the Spa Day. “The sense of smell is a tremendous trigger for memory recall and will trigger the memory, feeling of this day,” said Cheryl.

Each parent is gently encouraged to have a rest in the spa while the facilitators keep an eye on their child.

Nearly each parent at this playgroup remarks upon the fence surrounding the play area, and how grateful they are for the safety it brings them. This gives an insight into the priorities of carers and the importance of safe spaces, of which Australian of the Year 2022 Dylan Alcott has further brought to light, to name just one of the many changing the dialogue around disability.

The children are able to choose to wander and explore the outdoor area or stay indoors and enjoy the variety of play spaces. Despite there being nearly 20 people present, the morning is serene. The space, the atmosphere, allows each child to follow their own compass. One girl plays at the ice cream shop beside the cardboard cubby, another in the dress-up corner.

There is great attention to detail in each area, with different colours, patterns, textures and sensory scope. Most notably, there is space, to breathe, to move freely.

Rachel, the mother of two young twin girls talks about how the playgroup sessions have been really good social experiences, for both she and her children.

“It is just a place that I can come, the kids can enjoy themselves and I can relax. Even just to ask questions about their development and stuff like that, it’s really good, you have someone that you can talk to and ask for ideas.”

Rachel has an older son with autism and she feels comfortable to talk about her whole family and wider experiences here.

Dee, mother of Ege, remarks how Cheryl helps to foster a positive atmosphere.

Dee has known Cheryl for over ten years, having come to this group when her first son was one and a half years of age.

“Who is running the playgroup is very important.”

“She’s like a psychologist, like a mum, you feel welcome.”

“She just gave me something to look forward to every week, I loved going to her playgroup.”

Dee said that it is fun every time, she looks forward to it. The kids enjoy there time here and she gets a chance to sit down and relax, have a coffee.

“We all chat about our experiences, ask each other questions, sometimes we find good answers.”

Cheryl is so pleased to have Dee back at the group, with knowledge and experiences to share from her time at the Pascoe Vale PlayConnect, with her first son, Effie.

“It is so positive and gives other parents hope that their own child will develop abilities, as Dee’s son Effie did,” said Cheryl. “He has also come along to group to visit and attended the holiday program where he made a new friend with Rachael’s older son.”

Joe is a regular attendee and appreciates the bonds that come from a shared understanding.

“It’s been really good because it is a group of neurodiverse families,” said Joe.

“He [Fred] goes to daycare and we have other family friends but their experiences are quite different, as more neurotypical things and it feels like people here understand a bit more what it is like- with kids with different needs.”

Joe pauses, drawing thought in.

“It is kind of feeling less isolated, less alone because you know you can get to feel like you are not the only family that has this life and has some challenges, but also the good things about having neurodiverse children and then when you are in a group like this it’s like, ‘Oh, it’s not just me, there are other people in the world like that’ and communities can be built around that. Individually it feels nice to feel not as isolated.”

“I think we do have a very strong bond.”

“I’m just watching Fred play and I’m like man, he’s just so cool. He could be doing all these other things but he’s so good at climbing and so closely bonded with people who play on his level and shows his excitement so genuinely.”

Throughout the session, Jo weaves through the group. As Cheryl’s fellow play support facilitator, Jo welcomes parents, talks with them, plays with the children. Jo was a volunteer for many years before being a paid worker and comes with a background working in social welfare. She is there before the session preparing, she is there during the session providing extra support and afterwards, she and Cheryl have a chance to unwind and process together.

“Without her I could never run this program,” said Cheryl. “And that we debrief after each session and Jo shares her observations and we discuss strategies with each other for our children and parents. Jo is invaluable to our program.”

“We are a community, a family, a place to be us.”

One mother, chastising herself said, “Ooooh we are a bit late,” when arriving, to which another woman responds kindly: “This is playgroup, you are never late. You can come at anytime during those two hours.”

Straight away, the onus is taken away from the mother, who is, like everyone here, doing their best. 

“Nicholas loves coming,” said mother Jennifer, “especially to this one, because he can run around and he loves his trains, he’s obsessed with Thomas. It is structure for every Thursday.”

“When we first arrived, he wouldn’t even stand next to another child, now he stands next to the twins or anyone and just starts playing.

“He loves it and gets all excited. As soon as I rock up and reverse the car, he is like ‘Eeeeeee’,” squealing with joy.

The notion of the kindness that you give, and is then returned, is alive and well here. Jennifer donates toys to add to the collection, which extends the play opportunities. She goes on Facebook and asks if anyone has any toys appropriate for children with autism, in this age bracket.

“It is all good karma in the end, if you give back, you will get something in return.”

Cheryl is familiar with this notion and agrees. She recalls one mother who once told her offhandedly:

“She said to me, ‘Chez, I still use that thing that you told me on the very first day that I came when you walked me out to the car, just to sing to them: “We’re going in the car, we’re going in the car’. Whatever, anytime that she wants transition, anytime that she wants her child to experience something, to cope better, she uses the singing and that was like, Oh my god, of course I had forgotten about it. I say a million things to families.”

“Isn’t it great when you get those great opportunities to know what you’ve done and that you didn’t know the impact you were making was so tremendous,” beams Cheryl.

Often, people may never know the impact their words or actions have on others, whether they are positive or negative. 

“I didn’t have this level of support,” said Cheryl. “I wasn’t aware of it and it is just so hard to be a parent of a child with a disability.”

Once, while in a shopping centre, a woman was scoffing and making a fuss over Cherly’s child who was climbing on the bars.

“I just ignored it and ignored it and ignored it and ignored it and just before I left, I turned around and said to the lady, ‘You have no idea what this little boy’s life is like’.

Cheryl said that was all she had to say. She did not have to explain.

Now, having been part of PlayConnect+ playgroups for 11 years, she feels that she has created a space where people do not have to say any of that. They do not have to explain, but they can share if they like. They can feel safe to do so.

“It just gives me such happiness and a sense of a place in the world where I belong,” said Cheryl. “A sense of belonging and being connected to the community like this at these really fragile stages- because I was a mum with a child with a disability, I was a single mum so all of those things and the disbelief that people just go, ‘Oh! It is just a naughty child.’”

“All the different things that we talk about here cover a life, of what people’s lives are, and the realistic aspect of what people’s lives are.”

Families feel understood here at PlayConnect+. Most fundamentally, they can be comfortable, accepted, treated with care and compassion.

“Sometimes our parents are crying, suffering Depression, desperate, been told upsetting news. As this is a grassroots level for families often parents are at an initial level of processing and experience shock and grief, with a lot of confusion of what they do next. I assure them that this is a normal way of feeling and I will help them find their way (NDIS) and that they are in a ‘safe place’ where everyone there will share their own knowledge and never judge them.”

“I know it’s not in my job description, we do hug here and it is a bit like, it is a healing thing.”

Families and children can come in, exhale, and be.

Learn more about the PlayConnect+ program and find a group here

Article Sinead Halliday
Photography by Mylie Nauendorf