How did you first become aware that there might be a concern about your child’s health or development? What were the early signs that led you to seek a diagnosis?
When Madison was a baby she was initially reaching her developmental milestones until around 18 months old, then something changed, or maybe it didn’t because she remained the same, frozen in time at 18 months. Madison didn’t respond to her name or give any eye contact, she didn’t have first words or pre-verbal signs or ques. As we began the diagnosis process and seeking help we quickly discovered Madison had a lot of distress when visiting any clinics or appointments and didn’t react like other children.
2. Can you tell me a bit about the diagnosis your child received? What does it mean, and how does it affect your child’s life?
Madison is autistic, diagnosed at level 3 with a PDA profile (pathalogical demand avoidance) and global development delay. She is non speaking and has challenges surrounding sensory processing, ARFID and severe anxiety. Madison requires a low demand environment, total autonomy and safe space to explore and develop not only her world, but ours. Madison has been assessed recently for emotional development and places her developmental range between 18-36 months. Madison is enrolled in home schooling this year, which is a challenge as she not able to engage in academic learning at this stage of her development.
This diagnosis poses many challenges and difficulties for Madison, pathalogical demand avoidance is still not recognised in Australia, although the awareness is gaining traction very quickly as more and more children are presenting with PDA. It has been our experience with Madison that most providers are not PDA informed which makes delivering purposeful therapies a challenge and often results in imposing demands on her, breaking trust and causing dysregulation and anxiety during sessions.
In 2020, following a visit to an in clinic speech therapist, Madison became housebound, her anxiety became so great she was unable to leave the front door let a known get in a car, and believe me, between countless therapists and advice, we did try. Today, she has been housebound for 3 years, so the effects on our family are profound, there was no first day at kindy, or first day at school, so it affects her ability to lead an independent life and enjoy different environments and facilities and being with peers.
3. How has the diagnosis impacted your family dynamics and daily routines? Have there been any specific challenges or adjustments you’ve had to make to support your child?
We have had to adapt to a whole new way of parenting for Madison, the impact has been a challenge on our family as we try and work around her PDA needs and still meeting the needs of Harrison her neuro-tyoical brother. We don’t impose routines or schedules for Madison as it is perceived as a demand, we follow her lead, interested based play and learning, strewing. We are not able to leave the house with her, so we don’t get to go out as a family together, which is difficult and we often miss out on a lot, we can’t go out without planning and support, so it often feels like you’re on a time limit. But all that said, I know she is safe, she is happy, she is slowly developing at her own pace in an environment that gives her autonomy and on her level.
4. What kinds of treatments, therapies, or interventions has your child been receiving? How have these approaches helped your child’s development and well-being?
Unfortunately for PDA children, like Madison, therapies can add a demand that can be too much and increase their anxiety and add to dysregulation during sessions, we have an Occupational therapist following the DIR floortime model and accommodating Madison’s needs. We have had a number of different therapy’s over the years, including drama therapy, music therapy, play therapy, OT, speech, psychology but health and medical care, for a housebound child, has proven to be the most difficult. Finding the approaches that fit YOUR child is paramount, there is no guide or one size fits all approach.
5. As a parent, what are your primary concerns and hopes for your child’s future?
I fear for Madison’s health, given her eating disorder and the complexities of her disabilities and getting her the support she needs to make a difference in the quality of her life. My concern is her falling through the cracks and the system failing us. I hope to continue to support her as she needs, to help and support her development at her pace and meet goals and reach developmental milestones.
6. As a parent, what have you done that stands out as a complete life change for you (on a personal level – starting a business etc)
Madison has never liked typical sensory or decompression toys, until we made an articulated slug with our 3d printer, we made her some more Fidgets and showed our therapists, who loved them and our home business MadieFidgets was born. We started a Facebook page and shared some pictures, not really knowing what would come of it, just over a year later we’ve hit 1500 followers and made many sales and provided countless families and children with articulated fidgets and models.
This outlet, was beneficial to give me a sense of purpose, other than being just a special needs mum and being at home with her housebound, returning to work was not an option. Its given me a creative outlet and the opportunity to reach out and build a community after such a long period of isolation. I have been able to create a platform to help fellow mum’s and draw on my own experience with Madison to help create products that offer sensory input for visual, auditory and tactile systems.
