Our journey with Maddie

THE EDITOR: We are proud parents of a ten-year-old autistic girl, Madeleine. Maddie, as she is affectionately called, is for the most part non-verbal and suffers from sensory processing disorder (SPD), along with a couple other co-occurring conditions.

In her first year, Maddie missed key developmental milestones such as eye contact. She would look through you instead of at you. She also never imitated sounds nor movements nor did she ever point at objects or people and at one year of age there was no language.

The severity of her sensory issues at the time was also a clear red flag. By the time she was 18 months old she was still mouthing objects. It was around that time it was suggested to us that she may be autistic.

As her parents, it was difficult to accept that Maddie could be on the spectrum and with the support of family and a couple professionals who provided advice, we recognised that early intervention was needed.

The key to coping and giving Maddie the help to be the best that she can be was educating ourselves on her disorder. Autism is a neurological disorder with social and communication challenges as well as sensory challenges that co-occur with autism. After extensive research, we came to the realisation that Maddie was just a normal child locked inside a body over which she has little control.

By the age of two, we started a parent-based therapy called Relationship Development Intervention with a highly experienced professional in the US.

The result of this therapy was groundbreaking for us as it helped her build up her resilience and her self-regulation, ie, steady reduction in her anxiety.

It also helped us work on skill-building activities and narrowing the gap on the missing developmental milestones as a baby. We pushed through our own fears of potential meltdowns in order to give her all the experiences any child would have.

Understanding SPD also helped us understand her habits, needs and struggles. We came to understand and accept that her stimming (rocking back and forth, placing her hands over her ears and making certain sounds) was a means of filtering sensory input to achieve balance to her sensory system.

Another area we had to focus on was building flexibility to change. Maddie suffered from anxiety often triggered by the most minute of changes to her routine.

This anxiety would lead to meltdowns which could happen anywhere and anytime.

All of these interventions have contributed to a turnaround in her quality of life. Today, Maddie is a curious and adventurous child who can handle almost any environment even at its most challenging to her sensory system.

When she wants something, she will look you straight in the eye when she requests. You can play with her but you need to enter her world.

Most importantly, she loves hugs and kisses.

It has been a hard road but she has come a long way and is such a calm, loving, easy child. We have lots more work to do with her but we celebrate all that she has achieved thus far.

DANIELLE DUVAL HUNTE, Petit Valley