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.
Asking More from Medical Professionals
http://www.bellaonline.com/articles/art39121.asp
Advocating in Multicultural Communities
Severe Weather Events and Children with Special Needs
http://www.bellaonline.com/articles/art48466.asp
Finding Strollers, Walkers and Wheelchairs for Children
http://www.bellaonline.com/articles/art9507.asp
Emergency Preparedness for Families of Children with Special Needs in Washington State ~ an excellent resource nationwide
http://www.cshcn.org/resources/EmergencyPreparedness.cfm
Katie Couric Video-editorial on Hate Language
http://www.cbsnews.com/sections/i_video/main500251.shtml?id=2547964n
Us and Them - by Mayer Shevin
http://shevin.org/articles-usthem.html
Diversity World
http://www.diversityworld.com
NFPA Emergency Evacuation Planning Guide for People with Disabilities
http://www.nfpa.org/evacuationguide
The National Fire Protection Association (NFPA) developed this free guide as a resource for creating an all-inclusive evacuation plan that considers everyone’s needs for evacuation, including the needs of people with disabilities.
Please share this with local mayors, fire and police chiefs, and school district directors.
Bumbo Chair
Fundraising and Advocacy
Sibling Support and Rivalry - Brothers and Sisters of Children with Special Needs
http://www.bellaonline.com/articles/art33375.asp
Cousins of Children with Special Needs
http://www.bellaonline.com/articles/art44239.asp
Teaching Math Skills
http://www.bellaonline.com/articles/art38411.asp
Music Education
Recess Skills
Sleep Disorders
http://www.bellaonline.com/articles/art33877.asp
Family Village Educational Advocacy Information & Guides for Parents & Advocates
Family Village Information and Advocacy Links
Lifetime Video Health Corner Series -
Parents Who Are Caregivers - Lifetime Video Health Corner
Caring for the Caregiver - Lifetime Video Health Corner
Stress and Caregivers - Lifetime Video Health Corner
Too Much? Siblings and Stress - Lifetime Video Health Corner
http://healthcorner.walgreens.com/display/129.htm
Max Lewis - Notes on a Scandal
http://www.hollywoodreporter.com
Film Clip Max Lewis - Notes on a Scandal
http://www.foxsearchlight.com/NOAS
*Click on the book to go to Amazon.com.
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