Raising my child with special needs has been incredibly rewarding but also uniquely challenging. While all parents want the best for their kids, I require extra time, attention, and resources to care for mine. This can lead to misunderstandings with my extended family, who don’t fully grasp my day-to-day demands. A huge part of the issue is that my child needs near-constant vigilance from me. I monitor her health, development, therapies, and education around the clock. I advocate for accommodations, manage equipment, give medications, track data, and facilitate social interactions. This hyper-focus on my daughter’s well-being, which is absolutely necessary, can seem overbearing or obsessive to relatives not living it.
My family also underestimates the toll special needs parenting takes on my energy, career, self-care, marriage, and budget. Caring for my child requires me to stop working to handle the many appointments, meetings, and therapy sessions. The loss of income plus staggering medical and therapy bills strains our finances. Finding time to connect with my husband or friends is difficult. The physical and mental exhaustion of dealing with lifelong disabilities can feel crushing. Well-meaning relatives think respite is as simple as a babysitter for date night. But very few sitters can handle my child’s behavioural, emotional, and medical needs. I carry the bulk of caregiving myself, with little chance to recharge.
My family also holds outdated views on disabilities, expecting my child to “get over it” or accusing me of enabling dependence. They compare her to typical milestones, minimizing major accomplishments I’ve worked tirelessly to achieve. Their “normalcy” expectations put unfair pressure on both of us. A lack of understanding about disabilities breeds disapproval when I request accommodations for family events. However, small adjustments enable my child to participate and gain social connections. Exclusion hurts far more than inclusion.
Differing perspectives on behavioural interventions also cause conflicts. Strategies like reward systems, visual cues, and redirection may seem excessive to some. However, research shows they help build skills, reduce incidents, and prevent crises. My family needs to understand why I must be consistent. At times, well-meaning relatives overstep by attempting to “fix” the disability with advice, cure-alls, diets, or spiritual solutions. But there is no quick fix, only my daily effort and care.
Of course, I’m grateful for relatives who sincerely help with respite, fundraising, researching resources, errands, and accessibility projects. Their support is invaluable. While my journey will always have unique demands, open communication, and education can help bridge the gap with extended family. I aim to be open about our challenges while expressing appreciation for any sincere efforts to help. There will always be some who never quite “get it”, but I can find support in those making an effort and walking a similar path. My priority remains my child’s needs, first and foremost. With family working together with love and understanding, even impossible challenges can be overcome.
Add comment
Comments