Fuming Mad: Because Your Special Needs Child Comes First

Latest blog Fuming Mad: Because Your Special Needs Child Comes First is ready to be read online here https://www.fireflyfriends.com/uk/blog/fuming-mad-because-your-special-needs-child-comes-first/ In the early years of my special needs parenting journey I felt like my voice was silenced and that knowing my child best took a backseat to professionals who proclaimed to know more than I did. It took me many years to realize my voice for my child was much stronger, louder and the one who was the expert in his life and his needs. I had therapists tell me I needed to let my son cry it out in therapy even if he protested in pain or discomfort; physicians labeling failure to thrive even though he ate a consistent diet with more calories than an adult in one day and simply had so much neurological damage that he metabolizes differently; an orthotist instructing me to have my son “tough it out” if he no longer wanted to be in a durable medical suit that was squeezing him too tight; and even a self-proclaimed car seat specialist telling me I couldn’t turn my child forward facing in a car seat at 11 months old in order to prevent him from throwing up and aspirating due to severe sensory processing disorder by facing backwards. And then I realized that when I finally found my parental backbone (which inevitably happens for all special needs parents at some point), you make the “experts” fuming mad. It’s that special needs parent epiphany of I know how to protect my special needs child and care for him better than any text book or provider ever learned in school. How dare you go against expert advice and not follow the “science.” They bark back. I was asked to be a last minute guest speaker for the Automotive Safety Program put on by Riley Hospital for Children, Indiana University School of Medicine. My role was to discuss car seat models, their safety features, and compatibility for special needs children with my knowledge and experience as a former durable medical equipment affiliate and brand influencer. The audience was only physicians, nurses and medical residents. And jaws just hit the floor when I went against traditional car seat standards. Followed by fuming mad glances. It was too be expected when you are presenting unconventional content and challenging the medical field. But, I held my ground. Offering them real world examples of how modified our world must be with a child who has special needs. And that it will never be a one size fits all, or that we all can follow the same health guidelines. These are critical discussions to have because not all special needs children are not cookie-cutter scenarios -- even with adaptive equipment needs. What is safe for one child, may be the cause of injury or death for another. The topic of knowing your child best isn’t really discussed much, especially if that means going against experts, advice and standards. Special needs children aren’t a one size fits all. Each one that I have been blessed to know are so individually unique even if they share the same diagnosis or disability. One might need to recline in a car in order to keep their oxygen saturation above 90. One might need to sit upright so they don’t choke on secretions, one might need to lay completely flat after double hip and spine surgery. One might need to be forward facing before the recommended age so that they can handle their sensory processing disorder that causes them to vomit and potentially aspirate under duress. The biggest home run that I hit that day was getting that audience to just think about what I was saying. They didn’t have to necessarily agree, but I hope I planted the seed that parents ultimately know their own child best and sometimes that will mean going against what traditional standards or advice is. My hope is with time as more of us find our voices on the journey there will be less fuming faces and more proud smiles supporting us for a job well done. The post Fuming Mad: Because Your Special Needs Child Comes First appeared first on Firefly Blog . ************ https://www.fireflyfriends.com/uk/blog/special-needs/,https://www.fireflyfriends.com/uk/blog/special-needs/advice-support/,https://www.fireflyfriends.com/uk/blog/special-needs/disabilities/