Raising Disability Awareness - One Mum’s journey to connect through experiences, rather than diagnoses.
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Mum Life with a daughter who has higher needs
Kinora user Heidi has had a tough day. Her daughter Poppy, 12, refused to wear pants this morning despite the cold, she’ll only wear shorts or $110 Lululemon compression leggings that support her sensory needs, so it took a lot of effort to get her to school. Poppy’s in pain from chewing her lip constantly, an anxiety related habit, but can’t express that pain so she acts out instead, and spent the afternoon yelling at Mum. At dinner, Poppy wouldn’t cut up her chicken schnitzel because she can’t handle the scratching noise on the plate, so Heidi had to negotiate with Poppy to let her cut it up rather toss it. “We have our struggles every day”, says Heidi.
You see, Poppy has Triple-X Syndrome (also known as Trisomy-X), but no that doesn’t mean she’s had a bikini wax (and yes, people have actually asked that). Triple-X Syndrome is a chromosome variation condition that means rather than the usual two X chromosomes, Poppy was born with an additional third X chromosome.
The condition occurs in roughly 1 out of 1,000 females, and symptoms can vary widely from one person to the next. For some it can go unnoticed and undiagnosed until later in life, but for others, it can cause significant developmental, medical, and psychological issues.
Last month was Chromosome Variation Awareness month, which aims to educate people on often misunderstood X & Y chromosome variations, to encourage greater acceptance and understanding. Along with Triple-X, there are a number of other chromosome variations that can occur, that all pose their own challenges.
For Heidi, raising awareness means helping people understand the impact that conditions like Triple-X can have.
“I think people need to understand that any difference in a neurotypical person can make a massive impact into someone's life. For not only that person, but those that care for them and live with them.”
Some of the daily life impacts of Triple-X can include:
Developmental delays
Learning disability
Attention deficits
Speech delay/expressive language disorder
Low muscle tone
Genito-urinary or kidney malformations
Fertility issues
Depression/anxiety
Seizures
Invisible disabilities that may not have noticeable physical traits, add another roadblock on the way to understanding. From looking at Poppy, you can’t see her extra chromosome, but that doesn’t mean the impact is any less for her or her family. As Heidi puts it, “you can't see everyone's disability, but that doesn’t take away from their needs".
Focus on the experience, not the diagnosis
When we focus more on the impact a disability or condition has on a person's day to day life, Heidi points out, “it helps those with complex needs that are so broad that you can't define it to one disability.”
Entwined with Triple-X, Poppy has the main traits of ASD and ADHD, as well as auditory and sensory difficulties. This has led Heidi to the realisation that connection with others in the disability community should not be limited to just those who share the same diagnosis. “Just because you have an ASD diagnosis, doesn’t mean you only have ASD traits, you can have traits or impacts of a variety of other conditions or diagnoses” she says. Being part of a wider peer network and connecting with people who have a range of diagnoses means more people that can understand, provide advice, and give you the moral support you need to keep moving forwards.
Heidi’s best friend has a daughter with physical complexities, as opposed to Poppy’s developmental complexities, but the shared connection and understanding of caring for a child with higher needs transcends any difference in diagnosis. Often, it’s just that general knowing support and understanding that you need to help you through the day.
People are interested in learning about Triple-X, and that’s one reason why Heidi continues to raise awareness, but when bringing it back to what it looks like in everyday life, she often gets responses like “Oh I've never heard of that condition, but actually you know what my child has very similar traits”.
“You can connect by sharing experiences rather than diagnoses" Heidi says, “and I think Kinora is a really great space for that”.
Getting advice from another Triple-X mum might be hard given the rarity of the condition, but asking for help on Kinora and getting advice from ASD mums, ADHD mums, adults with sensory issues, and anyone who deals with similar symptoms as Poppy has, well that can be a goldmine for Heidi in supporting her daughter.
Getting on the NDIS
Poppy didn’t fit neatly into any box that her doctors could label with a definitive answer at the beginning, and this complexity made getting a diagnosis difficult. In fact, part of awareness raising is raising the profile of chromosome variations within the medical field itself. “As a parent I was very very angry because we had had issues from birth, and the list was half a page long by the time she finally got diagnosed with a condition.... technically the signs were there but everyone has very limited understanding of this condition that they never thought about it.”
Poppy was accepted into the Early Childhood Early Intervention program through NDIS before she was diagnosed with Triple-X at age 6. Once again, community connections paid a huge role in getting support for Poppy. Heidi was encouraged to apply for the NDIS by friends in the community before she really even knew anything about it.
Back then, Heidi found the NDIS application process easy, all that was needed was a GP to sign the forms, tick the right boxes and she was accepted. The planning meeting was a two-hour conversation of yes no questions, "can she use the toilet, can she put her shoes on, can she use a knife and fork, do you feel that she’s age appropriate in understanding the safety of crossing the road... It was very easy to answer, but very depressing because obviously you continuously reminded how different your child is.”
Once Poppy got her plan, that’s when the NDIS became not so easy to navigate. Heidi felt like they were left out in the cold, no support, no information on how to use the plan, it was “here’s your plan, seeya later”.
With each yearly review, and particularly when Poppy was 9 and moved from Early Childhood Intervention to permanent disability in the eyes of the NDIS, Heidi struggled to understand her plan and how to use it effectively. “At that point we were desperate”, says Heidi, “she was pulling knives on her sister, she was abusive, she’d just scream, yell, carry on, she couldn’t control her behavior or her moods.” This significant need saw an increase in funding, but still Heidi was left in the dark with how to actually use it. “I didn’t understand anything, did not know what any of it meant... no one ever explained it to me.”
Education is key
Can I trust this provider? How do I connect with people who understand? How do I set goals for Poppy? These are all questions that Heidi asked herself throughout this process. It took Heidi getting a job within the disability sector to begin to understand how to read and utilise Poppy’s plan. “I started in My Plan Manager in July of 2019, and went, ohhh is that what a plan means! I had no idea, 5 years as a participant and had no idea, because no one tells you.”
For Heidi, the biggest thing she wants other NDIS participants to know, is that to get the most out the NDIS, you need to educate yourself.
“We can't rely on the NDIS to give it to us because they're not going to. They give you nothing... it’s taken me working with NDIS plans all day every day for 2 years to gain that knowledge to be able to support her and me with our plan. So let's think about these people that don’t have that.”
Not everyone can, or wants to, devote their days to working in the disability sector, but that’s ok. There are things everyone can do to set themselves up for success with their NDIS. Heidi points out the most important tactics:
Connect to other people in the disability community (such as on a space like Kinora), other people have so much experience and knowledge to share.
Find resources that put the NDIS in simple language that you can understand and gives you practical advice
Prepare for your review, it’s having those conversations with the therapist and finding out what they think will help
Use technology to your advantage to keep on top of your budget
Don’t forget that if you are the carer and not the participant, the funding is there to help and support you as well as the person you care for. I get a cleaner so that its one less task that I have to do, so that I can give Poppy that time.
Another big one? Find providers that will work with you to reach your goals. Poppy’s original plan manager refused to process most items Heidi wanted to claim, and would rarely make any contact, “we actually were frauded by $4,500 from a support worker that I was unaware of, because I had no communication from her. So that was really hard.” Since moving Poppy across to MPM, after almost two years of working there herself, Heidi saw what a difference it made having somewhere that will help you get what you need, "I feel very supported, I have full access to be able to have the information to be able to make better decisions for her. I know where our budgets at, I know how much we’ve spent, I know who we’ve paid, what I've got left... I think the app the portal tool has helped concrete our journey.”
Getting the most from a plan
Poppy’s needs have changed on this long journey, and what she struggled with at 6 is totally different to what she struggles with at 12. Her goals have changed too, which was difficult for Heidi to learn how to communicate to the NDIS.
“I look at her as she's my child, and sometimes you don’t always look at what she can't do, you look at what she can do, because that’s what you’ve got to focus on in life.”
Although she still struggles knowing what to access, through education and connection, Heidi finally feels like she’s able to navigate the NDIS system, and use Poppy’s plan to truly support her. So what have been the most beneficial things the NDIS has given them access to?
Ear phones. Oh my god. $350 noise cancelling earphones, I was just blown away, how one small piece of Assistive Technology made such a difference in our lives. Massive. I was like Praise be!
Good support work, it’s hard to find ones that connect and stay. I have followed Support Workers that have moved to other companies.
Mentoring through All Women’s Mentoring, she’s more like a sister to Poppy, she takes her out into the community and they do things that interest Poppy. A year of repetitively doing the same steps she’s now able to complete tasks she never had before.
Occupational Therapy has helped dramatically, as well as the recommendations they have made for Assistive Technology.
Let’s support one another
At the end of day, the NDIS journey is easier if we support each other, educate ourselves, and spread awareness of different disabilities and their impacts. Raising awareness for chromosomal variations is not just about giving people some facts about a lesser-known condition. It’s about recognising that we are not alone, that you shouldn’t feel isolated.
No matter your or your loved one’s diagnosis, there are people out there going through similar experiences. If we can band together in this harsh landscape that is the NDIS, we will begin to see better outcomes for the entire disability community of Australia.
As Heidi puts it, “it’s a combination of awareness of different disabilities, awareness of how every disability can look similar to other disabilities. An awareness of not knowing what to do, or how to do it. And the impact that a positive plan can make to someone's life. They're the things that people need to know.”
For more information on chromosome variations, visit Australian X and Y Spectrum Support.
Connect with others who have have gone through similar experiences as you on kinora, and be supported to get the best out of your NDIS.
