“Building a House While Living in it”
Welcome to our blog series where we delve into the world of speech pathology and occupational therapy. In this blog we explore the experiences and insights of those directly impacted by our profound work. We had the privilege of sitting down with a remarkable parent, Melissa who graciously and candidly shares their journey of raising a child with autism spectrum disorder (ASD).
Through this candid Q&A session, we aim to shed light on the challenges, triumphs, and invaluable lessons learned along the way. Join us as we gain valuable perspectives, fostering empathy and understanding in our collective pursuit of supporting individuals with autism and their families.
Interview with Melissa
How has your journey been since your daughter’s diagnosis? How have you been coping with the challenges?
Harlee was diagnosed with Level 2 Autism at the age of 6. To be honest the journey has been challenging due to figuring out her needs and how we can best assist her. It’s like building a house while living in it. The most challenging part is figuring out her routine and sticking to it. For the most part now that Harlee is 12 I tend to include her in all her NDIS plans and what SHE would want or like as opposed to what I think she would like. For example Harlee would like more independence so I try to include this into her plan.
When did you know your daughter had Autism? How did you know?
I didn’t see the signs for Autism, however looking back Harlee was so TextBook behaviour. I was so tunnel vision on ADHD (I was diagnosed with ADHD when I was 10) so I didn’t think of anything else. It wasn’t until Harlee’s Prep teacher pulled me aside one afternoon and just asked if I had a “checklist” for Harlee. I wasn’t sure I quite understood what her teacher was trying to explain or get me to do so I asked her to just take her “Teacher” Hat off and just tell me what she thought. Her teacher explained that there were indications of developmental delays that showed signs of her being on the spectrum. Like I said looking back now it totally makes sense, it was suggested that Harlee repeat Kindergarten as she wasn’t ready. We just mistook her meltdowns as poor behaviour and tantrums.
What are some of the unique strengths and qualities of your daughter?
She is so strong willed and headstrong. I love when she gets an idea in her head she will go to the ends of the earth to do it. Harlee is incredibly empathetic and sympathetic, the care and nurturing nature that Harlee has is absolutely beautiful. I also absolutely love how Honest and straightforward Harlee is. Harlee says what she thinks and isn’t afraid to sugar coat it.
Can you share some of the most helpful resources or support networks you’ve found for both yourself and your daughter?
Facebook!!! I’ve been a part of sooo many support groups and online info nights but nothing compares to sharing stories, challenges and topics with real life parents/caregivers in the same situation.
In what ways do you find your parenting approach differs from others because of your daughter’s autism, and what have you learned from this?
I find that I pick my battles so much more with my ASD child than I do with my youngest. Whilst my youngest has ADHD he understands so much more than what Harlee would. I’ve learnt so much more about patience in the past 7 years than what I have in the past 42 and this is all because of my Harlee.
How do you navigate societal attitudes and misconceptions about autism, and what advice would you give to others facing similar challenges?
Sometimes it’s hard. It was so much more difficult when Harlee was younger and I didn’t know any better. I remember when Harlee was 4 and her brother was 3 I took them grocery shopping. I remember this day so vividly. Harlee was having such a bad outing and was so upset. It turns out that she was overstimulated with all the lights, music, and just overwhelmed with the situation. Harlee started getting agitated and a meltdown began, because Harlee was upset, my son, Asher started to get upset by the sounds of grunts, screaming and yelling that Harlee was making. So here I was standing in the middle of Coles crying because I had both children yelling and screaming at the top of their lungs. If I had a do over of that day knowing what I know now I would have prepared for the worst. I would have gone on a day that offered Low Sensory Days. I would have made sure my children were well fed, entertained, and looked after their needs before mine. To sum it up my advice is Always Be Prepared.
Can you describe a particularly joyful or rewarding moment you’ve experienced with your daughter that you attribute to their unique perspective or abilities?
I love how compassionate and thoughtful Harlee can be. I remember walking somewhere and coming towards us was someone in their Army Uniform. Harlee out of the blue piped up and said “Thankyou for everything you do” I didn’t ask her to say this, and if I’m honest I was so incredibly shocked in a positive way. At that moment I knew I had done something right!
What are some common misunderstandings people have about autism that you wish more people understood?
That the meltdowns that Harlee faces aren’t tantrums but just her trying to cope with something that doesn’t feel right. I wish parents would see the meltdown for something other than “Poor Behaviour” or “Bad Parenting”. The negative stigma around meltdowns is a huge misunderstanding.
How do you balance advocating for your child’s needs while also allowing them to grow and navigate the world in their own way?
This is a tough one because I want my daughter to make mistakes and learn from them but I also have a responsibility to protect her. Her level of understanding is quite limited, and unfortunately has a higher level of misunderstanding.
Have you found any specific therapies or interventions particularly effective for your child, and how do you go about deciding what’s best for them?
OOOHhh Over the years Harlee has attended MANY different types of therapies, the two that she has stuck with is Occupational Therapy and Psychology. We have had great success with Speech Therapy however it got to the point where intervention was needed in the school grounds so we were rather limited there. Harlee greatly benefits from a Support Worker. Whilst Harlee and I have a great relationship I understand that there are things she doesn’t feel comfortable disclosing to me, therefore we have an amazing Support Worker which takes her out into the public and helps her grow her independence.
How do you prioritise self-care and maintain your own well-being while caring for a child with autism?
This is something I’m still working on when I figure it out, I’ll let you know. Haha – in the meantime I’m open to ideas. I guess in a perfect world I would take time out just for me. Do something that I love, focus on something I enjoy doing. However because I’m Incredibly time poor and am awful at delegating this will continue to be an area to work on.
What are some ways friends and family members can offer meaningful support to you and your child?
Just being there, not just for my children but also for me. Being a single parent sometimes takes a toll. As a single mother I’m forever playing good cop and bad cop so having someone to bounce off in these situations would be appreciated.
Can you share one of the proudest moments you’ve had as a parent?
HAHA Just one? In the past 14 months my kids have really had to grow up quickly. It must have been so hard to have the family home dynamic shift and be thrown in the deep end. I applaud how well both my babies have coped and how far they have come. Working together as a 3 man team is the New Normal but I wouldn’t change it for anything.
How do you approach explaining autism to your child, and how do you foster a sense of understanding and acceptance within your family?
I try to explain things in terms that they will understand, for example when Asher doesn’t get why Harlee gets something that he doesn’t like NDIS items. Asher knows Harlee has Autism and he understands that she misinterprets a lot of the things most of the time but i try and break it down and ask him questions so i can gauge his level of understanding, and visa versa i make him ask me questions so i can explain them in further detail.
What advice would you give to other parents who are navigating a similar journey with their child’s autism diagnosis?
Look for the positive aspects of a child with ASD, don’t think “Why me” start thinking “Why Not Me” I was given this piece of advice when Harlee was first diagnosed and every so often when we’re having a rough day I look back on this advice and re-map my next steps. I Love Holland!
Melissa is a life-long friend of our director, Rachelle. As infants they were neighbours and have since fostered a 40 + year friendship. If you have any questions for Melissa, please reach out via the comments section.
Further Resources
These websites and organisations offer a variety of resources, support networks, and information to assist Australian parents of children with autism in navigating their journey.
Autism Awareness Australia
Autism Awareness Australia provides information, support services, and advocacy for individuals and families affected by autism spectrum disorder (ASD) in Australia.
Autism Spectrum Australia (Aspect)
Autism Spectrum Australia is one of Australia’s largest service providers for people on the autism spectrum. Offers a range of services including early intervention, education, and advocacy.
Raising Children Network
Raising Children Network is a comprehensive online resource for Australian parents providing information on child development, health, and parenting strategies, including resources for parents of children with autism.
Autism Queensland
Autism Queensland offers a range of services including early intervention, therapy, education, and support for individuals and families living with autism in Queensland.
Autism Association of Western Australia
Autism Association of Western Australia provides support, education, and advocacy services for individuals and families affected by autism in Western Australia.
Autism SA
Autism SA is South Australia’s leading provider of autism-specific services. Offers support, information, and resources for individuals and families living with autism in South Australia.
Autism Tasmania
Autism Tasmania provides support, information, and advocacy for individuals and families affected by autism in Tasmania.
Autism Victoria (Amaze)
Autism Victoria (Amaze) Offers information, advocacy, and support services for individuals and families affected by autism in Victoria.
Yellow Ladybugs
Yellow Ladybugs is a community organisation providing support, events, and resources specifically for autistic girls and women, including support for their families.
Autism Gold Coast
Autism Gold Coast is a community organisation providing support, resources, and advocacy for individuals and families affected by autism on the Gold Coast.
