Being a special needs parent is a journey filled with ups and downs, joys, struggles, and a constant learning experience. For me, this road began with surprise and a sense of shock and confusion, followed by a rollercoaster of emotions as we navigated our new reality. How things might have been different if I knew then, some of the things I know now.
You might be someone who is also at the start of their journey. Here are some of my reflections that hopefully will help you be aware of what might be ahead and take comfort that you’re not alone.
What it is to be a special needs mom: the before and the after picture – the good, the bad, and the “this is what it is.”
The “Before” Diagnosis Picture
Before becoming a special needs mom, I dreamed of having a baby and what I would do if we had a boy or a girl. I had plans for my child – what schools he would attend, what after-school activities we could do, and how he would spend summers with his grandparents. But all this took a sudden detour when our one-and-a-half-year-old son Alisander was diagnosed with a genetic syndrome – more about what Cri du Chat is in another entry. The moment of diagnosis was overwhelming and traumatic. I don’t even remember what the doctor said when explaining the medical report. I remember leaving his office feeling scared and unsure of the future.
The “After” Diagnosis Picture
After the initial shock wore off – which took weeks, if not months – we began to face the reality of our new journey. We had to learn to navigate a complex and often overwhelming world of doctors, assessments, therapists, child care and schools. We are learning to advocate for Alisander, to understand his needs and limitations, and to find ways to support his development and happiness.
I’m learning that as vital as it is to do all this, I must also find my own projects. This was one of the biggest challenges I faced – to have something that helps me fill my cup so I can better serve my son.
The reality is that there is no good or bad, only “this is what it is.”
Despite our many challenges, I want you to know that special needs moms can also find moments of joy and fulfilment. These come with the steps emerging when our child grows, develops, and progresses. No matter how small. I remember celebrating the first time I heard “I want water”. Before, it was always pointing or one word – “water”.
We need to find our comfort in the love and support of others, and sometimes, these don’t come from family and friends as much as from solid bonds with other special needs parents who understand our journey. I’m discovering new strengths I never knew I had. I guess I’m finding purpose in my role as my child’s biggest champion.
Being a special needs mom is a unique and challenging experience, transforming a parent’s life in ways I never imagined. It requires strength, resilience, and a constant willingness to learn and adapt. But despite the difficulties, it is also a journey filled with love, joy, and fulfilment, and it allows me to make a meaningful impact on Alisander’s life and the lives of others.
