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Riding the Roller Coaster of Life… Raising Two Daughters with Disabilities

Twenty years ago, I was living in rural Vermont as a single parent of two daughters who had disabilities.  The oldest daughter wasshutterstock_129387935 diagnosed with medical issues….asthma and allergies, trauma, emotional behavioral challenges and developmental delays at age 4 years of age. The youngest daughter at age 8 struggled with depression, learning disability and being gifted.  I learned early on when the girls where younger, I needed to get over my fear of asking for help to learn all I could to be an effective advocate for my children.  I had to learn skills to interact with many professionals, medical and school people. I also had to deal with many emotions from frustration, sadness, being overwhelmed, happiness, anger and disappointment.

Lessons I Learned

I witnessed and experienced the best of services and supports to the worse, where I would think how can these people treat another human being in that manner. I learned to find a voice for myself and my family.  I also learned that humor was a must in my life, without it the challenges and darkness would have been great.  I learned to ask questions and did not stop until I had answers. I learned to be an expert at documentation and observation and not only with my daughter’s services. I could sure read a person’s body language in a meeting quite well too.

I learned to deal with people’s criticism, the shame, the looks and whispers in the stores when my oldest daughter acted out or had meltdowns. I did not have family support and only two friends that I could go to for support. Since my oldest daughter had multiple challenges, I would get numerous phone calls to come to school to pick her up for something that she did. I learned that many employers are not receptive to parents who have children with disabilities, let alone a single parent (who I believe have more unique needs). I learned that many childcare providers did not want the task of taking a child with emotional behavioral challenges.

I learned that the system which included the mental health and social services was not at times family friendly. In one year at the local mental health agency, our family experienced a changeover of 10 different case managers.

The roles and hats I wore were case manager, advocate, parent, referee, mediator, taxi driver, organizer, expert on special education, communication and financial wizard.

My personal and professional experiences led to me to returning to college in 2008 for a Masters in Special Education with an Endorsement in Early Childhood Special Education. Now, I share my expertise and knowledge with families and professionals.

A Few Suggestions for Parents, Service Coordinators and Providers who Work Together

Parents: Be strong, ask for help, ask questions, have patience, research, advocate, have a support system, filter out the naysayers, humor – use it or you will lose it , have an organizational system in place for the paperwork, don’t forget to do “me” time, family and couple time, ask for respite

Service coordinators & other providers: Support, listen, listen, did I say listen, ask questions, don’t judge, have patience, don’t assume, have compassion and humility

Parents: What has worked for you when working with a provider or service coordinator?

Service coordinators and providers: What have you learned from your families?

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Michelle Twitchell, lives in Roanoke with her two dogs, Belle & Lucy and (cat) Bella. Her two adult daughters and two grandkids live in Vermont. In her spare time, she provides pet sitting services to clients, gardens, hikes, walks, reads and spends time with friends. Michelle also has a Masters Degree in Community Psychology from Springfield College.  She has 28 credits in a Masters Degree in Community Mental Health Counseling from Southern New Hampshire University.   

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