Our journey continues to be long, complex, enlightening, at times grief-stricken, but always filling us with pride for the strength our son holds. As our struggles continue we question, guess, get angered and, in the end, return to the understanding that Special Happens.
This site is a combination of a community resource and personal blog covering topics surrounding raising a child with special needs. Specifically included diagnosis’ include Epilepsy and ESES/LKS, Autism, Cerebral Palsy, Sensory Processing Disorder and Developmental Delays – though the coverage is not limited to those. It is my hope that sharing with families like ours, we all can Move Forward.
Move forward. Attempting to control what happens in life is a painstaking series of tasks that can only be met with disappointment. Accepting that things happen, life happens, Special Happens…that is this blog.
After discovering the differences your child will manage, navigate and overcome, the sense of shock can lasts for years, sometimes returning to rear it’s head when least expected. One day a realization that your child is ‘in there’, stuck in a body that fails them yet rises them to a level we can never comprehend or reach, must be met. In truth, should this point not be hit, you will drown. Eventually, hopefully, every family can find themselves meandering if not immediately confronted with the frank knowledge that like much in life, Special Happens.
Coming to the understanding that “Special Happens” is far from an automatic response. Our family has not traveled the roads of many before us, for as long…and our road will look very different from another’s. The raw realities of raising a child with special needs, fighting for them, beside them…fighting to discover what and why, the sorrows, anger, sometimes resentment as “why *our* family”, the demands for understanding, diagnosis…none of these are easy or quick and always, they are dirty.
Moving along the continuum towards understanding that this is where you’re at, that this is the starting line, lends the strength required by parents of children with special needs to do the research, make the connections, develop informed decisions, and help guide the circle of care (including the specialty docs) towards the best solutions for your child. The continuum can come at any time, in any order and usually include:
Discover. We discover what makes our children special. We discover the names attached, the classifications used to describe their challenges. Even when we know that there is no clear cut medical dictionary description of who our children are, how they will touch another nor to what heights they will rise.
Embrace. After the sorrows, we must wake up. These are our children. My child. Your child. We’ve loved them far longer than a ‘descriptor’ has been attached to their actions, their physical presence.
Educate. Beyond love, safety and acceptance, the first way we can best serve our children is to educate ourselves. We know ‘who’ they are, but understanding their afflictions is a different matter all together. Educate yourself on what foods to eat or avoid; what medicines may assist in releasing them from their bonds enough to shine.
Advocate. The only way to advocate is to be educated, gather ideas, formulate your opinions coupled with the knowledge of who your child is as an individual and then pursue these avenues. Speak for your child when he or she cannot. Remove obstacles when he or she can not.
Encourage. We must encourage our children to be the best individuals they can be. Encourage socialization. Encourage independence or self-advocacy. Encourage others to help your child if they are unable to speak or care for themselves.
Treasure. They are our most precious gifts. They have chosen us to care for them, to be their voices, their protectors, their bulldozers. This honor can only be met with treasuring their very existence, and the lights they shine all around us.
Laugh. Quite simply, if you can’t find a way to laugh in life, you won’t survive. Getting caught up in the hardships and sorrows will remove the probable sparkle that is to come. Live. Laugh. Love….and Laugh some more.
This is that blog and hopeful resource for you and your family. Enjoy.