As a parent managing the complexities of raising multiple children with special needs, my life is a tapestry woven with both challenges and triumphs. My personal health struggles include asthma, endometriosis, dysautonomia, mitral valve prolapse, and major depression. Once I embraced motherhood, my list expanded: I became a mom to a child with autism spectrum disorder (ASD), immune deficiencies, food allergies, and apraxia. With a roster like this, the casual “How are you?” can feel like a heavy question.
How am I? Well, it’s 9 PM, my kids are finally asleep, and the temptation of cookie dough is strong… so I’d say I’m doing pretty well at the moment! Is this disingenuous? I don’t think so. But I do wonder how my friends and family perceive my silence on the struggles we face.
For those of us unable to simply “choose a struggle,” life can feel murky. If I only share the victories, I risk being labeled as inauthentic or sugar-coating reality. Conversely, if I focus solely on the challenges, I might come off as negative or overly dramatic. So how do we navigate this when our experiences are so layered and complex?
We Find Our Tribe
One of the most significant challenges of living with chronic issues is the sense of isolation that often accompanies it. I’m not just an ASD mom; I also grapple with chronic fatigue. I’m raising three children under the age of four, two of whom are in different types of therapy. I don’t need someone who perfectly mirrors my situation; I need someone who can handle the full spectrum of my challenges without feeling overwhelmed. I seek connections with others who have their own struggles but refuse to be defined by them.
“Choose a struggle?” No thank you, I won’t be doing that. If you want to be part of my journey, you’ll need to embrace the whole buffet of experiences I offer — and yes, this is deeply personal. This is my life, my family. We are not solely defined by our challenges or our victories; we are multifaceted individuals.
We Face Our Struggles Daily, But They Do Not Define Us
- When I say I’m tired, it could signify a myriad of things. Please ask questions instead of jumping to conclusions.
- My children have diagnostic labels that help us access necessary resources. These labels do not define them, nor do they excuse bad behavior. They simply help us navigate how to support them during difficult times.
- Even with the best intentions, questioning the validity of our diagnoses or prognosis is inappropriate. We conduct thorough research, seek multiple opinions, and strive to function within what might be considered a “normal” range. If you find yourself wanting to read between the lines, please ask questions; there are many moving parts that may not be immediately visible.
- Some phases of life are significantly more challenging than others. Consider autoimmune issues — one child struggles with speech while another has sensory processing challenges, and I contend with my own respiratory issues. Add sleepless nights, growth spurts, or the flu season into the mix, and life becomes exponentially more complex. Please bear with us.
- While we may appear resilient, don’t idolize us. Given a choice, we would not select this path. Telling us “You’re so strong, I could never do that” can feel dismissive. Like many who navigate tough circumstances, we live our lives one day at a time — sometimes even one hour or minute at a time. Our hope is not the kind that can be neatly packaged; it’s raw and messy, grounded in reality.
Fluid Expectations Are Essential
Can you handle the buffet? We don’t have to pick just one struggle.
For those interested in the topic of family planning, you might find value in exploring other related subjects, such as this insightful piece on at-home insemination kits available here. If you’re looking for reliable information on IVF, this resource is excellent. Additionally, for a broader understanding of parenting challenges, check out this article here.
In summary, parenting children with special needs is a multifaceted experience filled with ups and downs. It’s essential to approach these conversations with openness and understanding, recognizing that every family’s journey is unique and complex.