It is our first and most delightful job to be parents to our children with special needs. Every person in a family has a unique perspective on the rest, and children often have no idea why we concentrate so hard on skills that seem the most difficult for them to accomplish.
It is not just during adolescence that, from mom, all advice is criticism. Children who are regular participants in early intervention, therapies, special education plans or other programs need to hear that we admire and respect them. They may benefit more from affirmations from us than therapy from world renowned experts.
It's ok to acknowledge their efforts and let them know that you understand that whatever work they are doing is hard, and that they are doing a good job at it, no matter what the expected level of progress or success might be. Tell them that they can say "No!" or "Enough!" and that you want them to communicate that to anyone who is working with them. Let them know that we all enjoy and deserve an easy day or a couple of hours off, and that many people in the family feel cranky when they have been pushed too far.
Sometimes we get so caught up in educating medical and education professionals, our neighbors, parks departments, and extended family about our children's diagnosis, we forget to also emphasize their individual talents, abilities, interests and personal goals. It's not easy to remember that we need to be advocates for our children's full expression of human emotions and attitudes, and that includes supporting however a child lets a professional or family member know that they have had enough of the job of therapy or intervention.
Scheduling in time to goof off, have fun, and even be bored can help us learn more about our children's preferences and priorities, and put us back in touch with our own. When my son started protesting every therapy appointment working on the big therapy ball, I asked his physical therapist if there was any alternative to it. "Oh, yes," she said. "Therapeutic horseback riding." He loved the alternative, and so did his sister.
Advocating for children with special needs should always start with the child at the center, with family taking the lead. Sometimes there is an alternative when a child resists therapy or other interventions that accomplishes more than what is first offered. Most parents I know have stories similar to our own - it is not that easy to juggle so many different issues building support, encouragement and opportunities into a child's young life.
When there is resistance or disinterest from schools or other programs in providing your child with services, find organizations that have developed advocacy strategies that work in difficult situations. Some offer parent support training and topics on child centered planning that make a world of difference to our little ones as they grow.
Browse at your public library, local bookstore, or online retailer for books like: No Pity : People with Disabilities Forging a New Civil Rights Movement and The New Disability History: American Perspectives (History of Disability).
6 by '15
Six Goals by 2015: Employment; Community Living; Education; Transition; Health; Early Childhood
No Pity (Drew Morton Goldsmith)