Contribution by Dawn Grosvenor, a mother of a daughter who demonstrated signs of autism after three years of age. After formally being diagnosed as PDD-NOS, recognized as an Autism Spectrum Disorder, a new search for autism treatments, materials, classes and teachers ensued. Dawn’s search for appropriate materials and activities went from frustration to passion. HOPELights serves the purpose of developing and recommending such materials and activities for special needs children that motivate and educate through positive, holistic stimuli. The materials are well suited across the range of special needs and provides support to many levels of Autism, Down Syndrome, Cerebral Palsy, MR, Spinal Bifida, Muscular Dystrophy, Pediatric Hospice and any child experiencing sensory or cognitive delays.
When I first learned of the word “Respite”, I was a single mother of a 7 year daughter with autism. The term came to me from a new friend who had a daughter about the same age, but with Down syndrome. She told me that I needed respite and invited me to “go out” with several other mothers who had children with special needs while a local church opened their doors with volunteers to watch over about 18 kiddos, all different ages. At the time, I crinkled my nose at the thought of leaving my daughter with perfect strangers, and even more so, “going out” with mothers whom I thought would spend the entire time complaining about everything. Did I have a lot to learn about life? The experienced changed both my daughter’s life and me in remarkable ways. I learned to trust (with sufficient scrutiny and research of course) and I learned to relax and enjoy kindred spirits for one night a month. I did not realize how much stress was accumulating on my shoulders and it was evident for the world to see, I thought I was a super-mom, invincible and I wore my hard work like a badge of honor on my shoulder.
Since then we’ve made light-years of progress…. I’ve been hiking to the top of Wheeler Peak, the largest mountain in New Mexico, I have gone on river rafting trips through the Grand Canyon, been kissed by the morning dew of rainforest trails in Washington and forged new paths through virgin snow in some of the most beautiful alps you have ever seen. All of this done without my sweet daughter with special needs. I would prefer that she was with me, all 135lbs snuggled in my backpack, but right now it is impossible due to her physical limitations.
Each time I return from a respite trip I am stronger, more patient and overall my perspective is improved by one thousand percent. Six years ago if I heard someone saying this very thing, I would have told you secretly that I thought that mother was selfish for spending time away from her child, who desperately needed her love, guidance and comfort. I have learned to think differently now. There are countless studies that prove caretakers of anyone with specialized issues, whether it is a child or grown adult, suffer from day-in-day out symptoms of stress or depression comparable to combat soldiers in war. The particular study in mind, is one from the Journal of Autism and Developmental Disorders*, in which the team found that a hormone associated with stress was extremely low and consistent with people experiencing chronic stress such as soldiers in combat. This body of work alone gives parents that weekend pass validation to take a step back and breathe.
Fatigue, exhaustion, and narrowed perspectives are all by-products of the loving sacrifices we make. It is so important to replenish your battery by taking time for yourself “respite”. You may not choose to cling to mountainside rocks up to a summit like my crazy ideas, but it is important to do something. For parents that are single it is especially hard, so consider shorter trips. For those on a tight budget, we have found programs that could possibly help you. It does not matter if it is a simple spa day, a walk in the park or a journey through a rainforest – taking care of you has to be the number one essential in our survival kit of parenting special needs children. Think of it this way… when travelling by plane the flight attendants tell you one very important thing – if the oxygen mask comes down, put one on yourself first, so that you are then able to put one on your child. Respite is oxygen. We hope you find some room to breathe.
The HOPELights magazine, a special needs resource has harnessed the power of customizable print to transform learning experiences for children. The periodical is the first of its kind targeted specifically to support the sensory needs of “differently-abled” youth. The company strives to support the unique population of parents, families, and children with an uncompromising, sustained effort of inclusion and joy. For more information please visit http://www.hopelightmedia.com.