Be the spark that can ignite a nation.
Newly made parents of a child born with special needs, quickly learn that navigating the world that has put up barriers to inclusion and general support can be a daunting and overwhelming experience. From the initial diagnosis to the ongoing search for the right resources and encouragement, it can be a constant struggle to ensure that their child receives the care and accommodations they need to thrive, and the family is not cast out into the abyss.
At the outset, there is no legal obligation on parents to home-care children with unique challenges, however, they are effectively coerced into it by the moral expectation of society which suits government and absolves them of the responsibility of provision. Forcing the state to meet its obligations to their child by dropping him or her off at the doorstep of legislators and walking away is not an option.
Life is rarely easy for a parent of a child with significant needs–or a husband looking after a wife recently diagnosed with dementia. In fact, it’s difficult and complicated, with very many ups and downs, good days and bad days, good years and bad years. Furthermore, there can be a lack of understanding and empathy from those who are not familiar with special needs. It can be frustrating and hurtful when people make assumptions or judgments about the child’s abilities or behaviors without taking the time to understand their unique challenges.
Despite these challenges, every parent that I have been privileged to meet in my 40 plus years as a disability activist, are more than determined to advocate for their child and ensure that they receive the assistance and resources they need to reach their full potential. These “warrior moms and dads” have had to learn to be proactive and assertive in seeking out services and information, and to be a vocal advocate for their child’s needs.
So friends, when you hear of a neighbor who is shut in taking care of a family member, lend a bit of love and kindness, offer to sit for a while so that the caregiver can take a much-needed break. Run an errand and most important take your hands, hearts and dollars and continue to build a community of people who care. It will not only warm every person, but every family who needs help, it will be the spark that can start fires across the nation.