Insulating ourselves against the outside world became a survival necessity during Riley's early difficult years. Every movement and noise would send him into a meltdown. We used ever method we could to shut the world out protecting Riley and ourselves against the intrusion of sunlight, noise and people. The blinds remained closed all day. A completely ignored sign requested knocks before doorbells and radios, televisions and conversation remained hushed with the goal of helping Riley learn to sleep.
When I accepted CMS recommendation to include our family in the pilot program Partner's In Care (PIC), under the umbrella of Hope Hospice I opened the floodgates. Suddenly our home was overrun by volunteers, nurses, case workers, music therapists and even personal care service professionals. It was overwhelming after closing the world out to suddenly have constant visitors and questions. Today was no different.
There were moments of recoil and panic I sensed after that one "yes" I gave to our CMS Nurse Care Coordinator four years ago. Fortunately, there have been many more moments of gratefulness for all good these people and PIC have brought to our lives.
To other special needs families still holding out: I understand all your reasons and they are valid. When you can though, please open the floodgates and let the sun and noise come back into your life. You will be happy you opened those gates.
Anyone else catch the Royal First Kiss this morning.... we managed between Ben 10 episodes:-) ?
Readers, please feel free to share any experiences you have had yourselves regarding your special needs experiences. I would love to share them... email me at firstname.lastname@example.org.