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Tips for Families who have Loved Ones with Developmental Disabilities

March is Intellectual and Developmental Disabilities Awareness Month

In recognition of Intellectual and Developmental Disabilities Awareness Month, Kenmore resident Aimee Levesque, the mom of an individual People Inc. serves, shares why it is important for families to advocate for their loved ones. Aimee’s daughter, Jessica, is a participant of People Inc.’s Arts Experience Program, former participant of the agency’s Young Adult Life Transitions Program and currently involved with its Self-Advocacy Program. Both fans of the arts, Aimee is co-founder and managing director and Jessica is an actor of Unique Productions, a company of artists that aspires to promote community integration through the arts by providing individuals with disabilities a chance to be artists, actors and writers.

 

“Parents are the best advocates for their children. You are an expert on ‘all things your child,’ play an important role in their education, and get to reap the rewards of their love and affection. As a parent advocate, there are many things that you can do, including:  

  • Learn about your child’s disability and teach them about their disability, too. How many times have you heard the saying, ‘knowledge is power?’ The more you and your child know about their disability, the better advocates you both will be. Use the Internet, books and brochures to teach your child; use anything you feel will help them understand. Be accurate, consistent and honest with them if they ask questions.
  • Know your child’s abilities. We are often forced to focus on what our children cannot do to get the services that they need, in-and outside of school, but what about the great things they CAN do? Focus on the positives and on all of the terrific things that your child can do, has achieved and will continue to grow at.
  • Keep records. Save copies of your child’s Individualized Education Plans, reports and samples of their school work. Take notes while on phone calls or in meetings. Put all of these items in a large binder. These materials may be helpful for showing where your child might have some difficulties or may highlight the areas where they have strengths. If you are not the best at keeping things organized or need help getting started, local parent groups and organizations may offer ‘Binder Trainings.’  
  • Have goals for your child. Just like every other student, your child will have goals and aspirations, so encourage them to set them. Also, include your child in the goal and decision-making processes as often as you can. Self-determination is a key component in the progression toward independence. If your child is unable to articulate goals to you, then creating these goals may become your responsibility, so do your homework.
  • Allow yourself to feel and display emotions. Repeat after me, ‘it is okay to cry, it is okay to get angry and it is okay to be happy.’ Believe it or not, it is very easy for parents of children with disabilities to repress emotions because they may feel that the emotions will get in the way of powerful advocacy. Not only is repressing emotions terrible for your health, but it can also be counterproductive to your advocacy efforts. You cannot be an effective advocate if you are stuck in a cycle of painful and destructive emotions. If you don’t think you can do it on your own, speak with a professional.
  • Join parent groups. Parent groups – online or in person – serve many purposes. They provide the opportunity to meet families that are walking similar paths. You can share resources, discuss similar situations, laugh and cry together. In essence, parent groups are a place of help, love and support.
  • Take care of yourself! Meetings, doctor’s appointments, therapy sessions – most days we find ourselves being pulled in what feels like a million different directions and the last thing we think about are ourselves. But what help can we be if we are sick or overstressed? It is important to make sure that our needs as parents are met, too. So keep those health-related appointments, get to the gym, act in a play or take a yoga class. The bottom line is: take care of YOU.”

 

Aimee Levesque is a parent advocate. She has worked in the disability field in Western New York for more than 15 years. She is co-founder and managing director of Unique Productions (UP!), a company of artists that aspires to promote community integration through the arts by providing individuals with disabilities a chance to be artists, actors and writers. A resident of Kenmore, NY, Levesque is currently enrolled at the University at Buffalo as a PhD candidate for the Curriculum Instruction and the Sciences of Learning Program.

People Inc. is a not-for-profit health and human services agency providing programs and services to more than 12,000 people with special needs, their families and seniors throughout Western New York. Since 1971, People Inc. has assisted individuals to achieve greater degrees of independence and productivity.

 

1219 North Forest Road | P.O. Box 9033 | Williamsville, New York 14231
Phone: 716.817.7400 | Toll Free NY 1.888.7PEOPLE | Fax: 716.634.3889

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