Autism Spectrum Disorder – now what?

Hours Monique Kaptein
Autism diagnosis? I will never forget the shock as I read “possible autism diagnosis” on Tessa’s medical chart just two days before her first birthday.
 
My oldest daughter, Emma, received the same diagnosis a few months later.  Within a short time, both Emma and Tessa were diagnosed with Autism Spectrum Disorder (ASD) and then subsequently with anxiety disorders, ADHD, and mild cognitive impairment.
 

Special Needs

Initially, I felt lost, overwhelmed and very much on my own. My daughters were struggling, and I was uncertain which therapies and resources to use. I also worried about paying the high cost for my daughters’ treatments. Despite support from family and friends, I needed more answers, direction, and a clearer sense of what to expect. 

We needed to understand the autism diagnosis and live beyond the label of special needs.

Waterloo Region Family Network (WRFN)

 
Today, I’m no longer alone. Locally, I became very involved in the Waterloo Region Family Network (WRFN), which has allowed me to meet other parents with exceptional children sharing this same journey. I can support them in the same initial steps I took so many years ago. A travel that is sometimes difficult, often unpredictable, but always rewarding.
 
WRFN has become an emotional home for my whole family. My daughters have participated in fun activities. They have built relationships with other children who, like them, have a different path. The girls have been welcomed. They can be themselves without fear of judgment or exclusion because of a label.
 
Over the past ten years, I have met wonderful people and developed authentic relationships. It’s incredible to have genuine friendships with mothers who “get” what you are experiencing daily. Regardless of what diagnosis was given to our children, our commonality unites us and creates an incredible bond.
 

Today, we continue to work very hard at living beyond the label. Once the girls turned 18, many supports changed, and some seem to have dwindled or disappeared. Shortages are due to the COVID-19 pandemic, government agency transition, and age-related needs changes.

The Dutch sisters

As Emma and Tessa mature, we explore the need for differentiated housing, social opportunities, and work placements. The girls are trying to get a fledgling small business off the ground to support themselves and other exceptional young adults – visit TwoDutchSisters.  Simultaneously, we try to centre on the importance of acceptance, family inclusivity, and living barrier-free beyond the label of special needs.

Come join the DutchGirlsSeetheWorld on a journey of “living beyond the label.”  Raising thriving young adults with exceptionalities certainly requires a village. We are eager to explore and create new connections with you.

xx Monique

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