As a mother navigating the challenges of raising multiple children with special needs, my list of experiences is extensive. I deal with asthma, endometriosis, dysautonomia, mitral valve prolapse, and major depression. When I became a parent, that list expanded to include being the mother of a child on the autism spectrum, managing immune deficiencies, food allergies, and apraxia. With such a complex situation, the question “How are you?” can feel overwhelming.
So how am I doing? Right now, it’s 9 PM, my kids are tucked in bed, and the temptation of cookie dough is strong… so I’m doing pretty well at this moment! Is that misleading? I don’t think so. Yet, I often wonder about the concern from those around us.
For those of us unable to simply choose one challenge, life can feel murky. If I share only our victories, I’m often seen as inauthentic or overly optimistic. Conversely, if I focus solely on our difficulties, I might be perceived as negative or inviting unsolicited advice. So, what do we do when our challenges are multifaceted? We seek out our community.
Isolation is one of the toughest aspects of living with chronic conditions. I’m not merely an ASD mom; I also deal with fatigue linked to chronic illness. Juggling three kids under the age of four, with two of them undergoing different therapies, is no small feat. I need companionship from those who can appreciate my full range of challenges without feeling overwhelmed. I’m not looking for someone who perfectly mirrors my situation, but rather someone who understands and can empathize. I need friends who also have their own battles but maintain a sense of agency.
Choosing one struggle? Not an option. Embrace the complexity or step aside — this is deeply personal. This is my family’s journey. We are not solely defined by our struggles or successes; we are more than that.
Consider the Following:
- When I express fatigue, it encompasses many factors. Please ask questions instead of making assumptions.
- My children’s diagnostic labels are tools to help them receive appropriate support. These labels don’t define them or excuse poor behavior; they help us understand how to assist them during hard times.
- While well-intentioned, questioning my or my children’s diagnoses is inappropriate. We dedicate time to research and seek multiple opinions to function within a perceived “normal” range. If you find yourself interpreting our situation, please ask rather than assume. There are many layers involved, and you may not see everything.
- Certain periods are significantly more challenging. For instance, when autoimmune issues arise — a child grappling with speech difficulties, another with social and sensory processing challenges, my own respiratory problems, and the added complexities of typical family life. These factors make everything more complicated. Please be patient with us.
- Although we may demonstrate resilience, don’t idolize our experiences. Given the choice, we wouldn’t opt for this path. When you say, “You’re so strong, I couldn’t handle that,” remember that like others facing tough circumstances, we are not heroes. We navigate our lives one day, sometimes even one hour, at a time. Not always because we are confident everything will be okay, but because we hold onto hope. Not the neat kind, but the messy, authentic kind.
Fluid expectations are essential. Are you still with me? Can you appreciate the complexity? We don’t have to choose just one struggle.
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In summary, my life as a parent to multiple children with special needs is filled with both challenges and triumphs. We are a multifaceted family navigating through various struggles; understanding and support from our community are crucial.