How New Directions Can Help You
“Patience” is the single mother of a 6 year old daughter who has been diagnosed with an anxiety disorder and Obsessive Compulsive Disorder. She called one day and said she was at the end of her rope. One specialist wanted to prescribe medication for her daughter but Patience preferred to try and use other methods to help her daughter cope, as she had been doing successfully for some time. She also had concerns about how her daughter’s school was implementing her 504 plan. Patience felt that the school staff was not communicating with her and that her daughter’s safety was being jeopardized as a result. I talked with Patience for sometime, and assured her that, as the Mom, she is the “expert” on her child and that her concerns and opinions have as much value as anyone else on her daughter’s team. We talked about what could be done immediately to assure her daughter’s safety at school and I helped her develop strategies for talking to the doctor and asking questions to help get abetter handle on the pros and cons of medication for her daughter. I then referred her to a New Directions Board Member who has had over 30 years’ experience helping families understand their rights under special education law, teaching advocacy strategies and assisting families in navigating special education on behalf of their children. Patience was relieved to have someone to talk to who shares some of her experiences and can empathize with how she feels. She said, “It’s nice to talk to someone who gets it!”
“Working with a mom of three kids diagnosed with Autism, she has finally found a person to stand by her side and brave being an advocate for her children. Told time and time again that what she was asking was unreasonable and out of the realm that a public school could do for her kids, I spent time with her and talked about countless schools that have provided the same support for little to no money to their budgets. What she was asking for was by no means out of the ordinary, it just took a little thinking “outside the box” to be creative enough to provide it.”
“When my oldest daughter was born in 1979, she spent the first six months of her life in the hospital. She had a lot going on: congestive heart failure, feeding problems—complicated by aspiration and pneumonia and the list goes on. It was scary. We had little information about her diagnosis. In fact, it took three months for a Boston hospital to pinpoint her specific diagnosis.
Did I say it was scary? The little bit of information we were given came from a medical text book and consisted of two pages: one with pictures and the other with medical text. The geneticist that provided the information discouraged us from looking for additional information because, ‘even if you do find it, you probably won’t understand it.’. He also stated that , ‘she might be retarded, she might not’. Her father and I knew better. We knew from the way she smiled, the way she fought so hard to live, the way she looked around at her surroundings, we knew she was a bright little girl. This was before there even was an internet, before social media existed, there was no such thing as email and finding information and support wasn’t easy. Word of mouth was the best way to find information. It took awhile. In fact, it took years until we found the right orthopedic specialist, the right organizations that had information we needed and before we met other families that were experiencing similar journeys as our own.
From the day my daughter was born there were two things I lived by: we were a family and what we did, we did as a family, there would be no activities that excluded my little girl from participating and no one was going to hold her back because she had a disability, she was going to grow up, get an education, pursue her dreams and live her life to the fullest. I share this with you because this is where my passion for New Directions for Maine Families comes from. I know that families still experience feelings of being alone, of not having someone that understands, someone to listen to or someone to cry and laugh with. New Directions can be that connection for families. When families with lived experiences support other families, something wonderful happens. What seemed impossible, now becomes possible. You find you are not alone. You find that your family is more resilient than you ever imagined. And you find that the journey you are on doesn’t have to be a lonely one; there are other people along the way who are there to offer encouragement and support. This is why I am involved with New Directions for Maine Families.”