A Little Bit Goes a Long Way

Mary Ann E. McGuirk

When our daughter, Nicole, was born 22 years ago, we started on a journey that included special needs, disabilities and medical terminology. We were not familiar with words such as cerebral palsy, early intervention, IEP’s (Individualized Education Plan) and autism and had to rely on the knowledge of others. As we traveled along, we learned that advocacy meant not only being assertive and demanding services but also building relationships with others and helping them recognize our broad array of skills to become an indispensable member of a team. We needed to be our daughter’s voice!

As parents and guardians, advocacy is something we do every day. When we advocate, we are talking mainly about how to protect our children and families as well as support our teachers and schools.   Sometimes the challenges are medical, educational, or even personal, but they are always important and that is why we advocate for our loved ones. We believe that our strength as parents lies in our ability to bring people, who may have diverse perspectives and competing goals, together to collaborate and problem-solve.

This leads me to the theme of this newsletter - Thankfulness. There is not enough space in this article to express our gratitude to the wonderful teachers, therapists, doctors, individuals and advocates whom we have met along this journey that have been so supportive. We especially have such deep appreciation for those who gave us the freedom and encouragement to spread our wings, offered a hand to hold when needed, and at the same time, did not allow us to get too safe and secure in a comfort zone.  Many of these people have become lifelong friends.

To those amazing people who have touched our lives, saying “Thank you” barely touches the surface:

• The medical staff who routinely took the hardest moments we could experience and softened the edges, included Nicole in all conversations and respected us when we asked them  to not wear their “white coat” because of behaviors that might develop due to anxiety.
• The many teachers, therapists and educational personnel who respected our views, refrained from telling us we were not being realistic, and “got it” when we said the goals in the IEP needed to be functional not only in school, but also at home and in the community.
• Miss Elise, who bought Nicole her first purse which was age-appropriate and allowed Nicole to share a commonality with girls her own age.  Her purses soon became a conversation piece when Nicole was out in the community.
• Miss Kristen, who worked with Nicole for 2 years on toilet-training and always believed that she could do it when we were ready to give up,
• Those who returned calls late at night, consistently wrote in the log book, took Nicole out into the community, and worked on her independence and choices.

 Also, we cannot forget the people who worked behind the scenes supporting our effort to give Nicole independence:

• The bus drivers and/or aides who made the trips back and forth to school safe and fun.
• Waitresses, librarians and others who understood that Nicole’s ability to make choices is accomplished with her iPad, pictures and facial expressions.
• Ushers at church who always welcome us as a family.
• The people at the VA Hospital and Meals on Wheels who offered and provided Nicole with volunteer positions which enhanced Nicole’s independence and quality of life.
• Those professional “advocates” who answered our questions, provided us with resources and taught us to be strong advocates by their wonderful example.

Has someone made a difference in your life?  Did your child’s teacher go that extra mile? How about the person who didn’t stare but offered to help you when your child was having a meltdown? Or the receptionist in the doctor’s office who tries to find an appointment that will not require a long wait? How often do we tell others that their “Acts of Kindness” are appreciated?

“When my son was in preschool, I would send cards to families thanking them for raising such wonderful and respectful children as they didn’t look at Jake as having a disability.  Rather, they found a commonality and included him in activities”, says Renee Georgi.  Her son is now in high school, still has some of the same friends, and yes…Renee still thanks both parents and kids for the impact they have had on Jake and her family.

There are many ways to express thanks to your child’s team:

• Give the person credit and praise for a great idea. Understand the perspective of the professional. You may not agree with what they are doing, but try and work it out together.
• If you get what you asked for, express gratitude. Everyone responds to appreciation.
• Be an advocate, not an adversary.
• Send an email, make a phone call or write a thank-you note. Include a gift card. We send Eat ‘n Park gift cards because that is Nicole’s favorite restaurant and the card has a smile on the front.
• Express gratitude and appreciation as a family at different times during the year. We buy gifts, make pumpkin bread and send notes at Thanksgiving because of the significance of the holiday.

Please take time today to thank someone who has touched your life. Let them know the value of their encouragement and support. This can result in stronger relationships with them.  And be sure to read the Focus on Health and Emotional Wellness section of this eNewsletter for how expressing thanks even benefits your health!