My friend Claudia is a smart woman. She plans and leads corporate tours all over the world. She speaks two languages. She's outgoing and fearless. But when it came to accessing critical services for one of her children, she was overwhelmed.
When her son Matthew was three, he was diagnosed with Fragile X Syndrome, something the family had never heard of, but which causes intellectual disabilities. Matthew was having trouble learning and had started early childhood special education services in Minnesota.
Along the way, someone suggested that Claudia's family apply for TEFRA (you know, one of those not-so-self-explanatory acronyms!). It stands for Tax Equity and Fiscal Responsibility Act (which also is not self-explanatory!). It is a program that funds certain services for people with disabilities. Claudia requested information and the application. When she received the application, it was almost an inch thick and looked very daunting, so she set is aside. I had another friend of mine tell me she hid it under her bed for a while because it was so intimidating!
After a few weeks, Claudia decided to tackle the application a little at a time during her "spare" time at work. That didn't work. It was very time-consuming to answer questions on the multitude of forms and collect documents she needed to submit. Thank goodness Claudia encountered one of those incredible people who understand how this complex system works and knew how to help. That person was a special education teacher and she offered to help Claudia complete the forms. She knew the "magic language" that needed to be entered into certain parts of the forms and she supported Claudia throughout the process.
Eventually, the application was accepted. That acceptance opened up so many doors for Matthew (and later his younger sister Sarah, who was also diagnosed with Fragile X). Claudia will say that it was worth the time and effort it took to make that happen. But she will also say "Why does it have to be so hard?"