In my last blog, I talked about putting your own oxygen mask on first. I know this can feel impossible for many parents. I’ve been there myself and I remember it well. In some cases they may feel so overwhelmed they struggle to get out of survival mode. And sometimes they are unaware of any resources available to help them. In the hope that it will prove useful, I am sharing some of the resources I have found to be helpful. These resources are government agencies, nonprofit organizations and for profit companies. Most are organized on the national level and you will find local chapters through their website. Others are local to the area where I live and you might find something similar in your locality. I am listing them in alphabetical order. If I have missed one of your favorites, please feel free to share it in the comments.
Aspergers Experts, https://www.aspergerexperts.com/
Asperger Experts is a transformational media company based out of Seattle, Washington that enlivens, empowers and educates people with Asperger’s, their families, and the communities in which they live. It was created in 2012 and is staffed by parents, people with Asperger’s, and professionals dedicated to serving and assisting others through sharing knowledge and building communities. This is a for profit company.
Because I Love You (B.I.L.Y.), http://www.bily.org/
This is an international nonprofit organization founded in 1982 by a father, Dennis Poncher, out of a need to help his own family. Their support group meetings are attended by parents who have children of all ages with behavioral issues such as negative attitudes, truancy, drug and/or alcohol abuse, running away, and verbal and physical abuse. Their mission statement is “To provide peer support and tools for families to help them work through unavoidable crises, build lasting relationships, create a harmonious home, and prepare children for life.”
Center for Parent Information & Resources, http://www.parentcenterhub.org/
The CPIR is made possible through funding from the Office of Special Education Programs (OSEP) at the U.S. Department of Education. OSEP supports the Parent Center network and the role that Parent Centers play in educating parents and improving outcomes for children with disabilities.
Child Mind Institute, https://childmind.org/
The Child Mind Institute is an independent, national nonprofit dedicated to transforming the lives of children and families struggling with mental health and learning disorders. Their teams work every day to deliver the highest standards of care, advance the science of the developing brain and empower parents, professionals and policymakers to support children when and where they need it most.
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) is an all-volunteer organization dedicated to be your source on such AD/HD issues as school, teachers, children, adults, women, girls, work, accommodations, diagnosis, resources, family, marriage, couples.
Council of Parent Attorneys and Advocates, COPAA, http://www.copaa.org/
The Council of Parent Attorneys and Advocates, Inc. (COPAA) is an independent, nonprofit, §501(c)(3) tax-exempt organization of attorneys, advocates, parents and related professionals. There are 6.4 million children with disabilities in America. COPAA members work to protect the legal and civil rights of and secure excellence in education on behalf of tens of thousands of students with disabilities and their families each year at the national, state and local levels.
Easy to Love But Hard to Raise, http://www.easytolovebut.com/
This blog got its start with the book: Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories (DRT Press, October, 2011). They support, share stories, commiserate, give tips, and provide safe haven for anyone parenting children impacted by ADHD (Attention Deficit Hyperactivity Disorder), SPD (Sensory Processing Disorder), PBD (Pediatric Bipolar Disorder), OCD (Obsessive Compulsive Disorder, PDD (Pervasive Developmental Disorder) or any other situation that takes the already difficult job of parenting and adds to the challenge.
Utah Easy to Love Support Group, https://www.facebook.com/e2lsupport/
Their mission is to provide a place for parents and family members to meet monthly and share experience, strength, give hope and awareness, to other families who have similar experiences raising children with ASD, ADD/ADHD, SPD, Anxiety and other mental health, developmental or behavioral struggles. “Through sharing in this experience of raising these ‘hard to raise’ kids, we grow stronger and more resilient.”
Family Voices, http://www.familyvoices.org/
Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families. Utah Family Voices, http://www.utahfamilyvoices.org/
Kids On The Move, Respite Care, https://kotm.org/respite-care/
Kids On The Move provides services throughout Utah to support families with young children with special needs. Their mission is to support the development of young children through four main programs: Early Intervention, Early Head Start, the KOTM Autism Center, and KOTM Respite Care.
Learning Disabilities Association of America, https://ldaamerica.org/
In 1963, a resourceful group of parents convened a conference in Chicago entitled “Exploration into the Problems of the Perceptually Handicapped Child.” The professionals that participated and these parents shared a common concern: the recognition of the dire need for services for their children, services that did not exist. During the months that followed, many preliminary details towards formation of a national organization were worked out. With a core of volunteers agreeing to become its nucleus, the Association for Children with Learning Disabilities (ACLD) was created and incorporated in January, 1964.
NAMI, https://www.nami.org/#
NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. What started as a small group of families gathered around a kitchen table in 1979 has blossomed into the nation’s leading voice on mental health. Today, they are an association of hundreds of local affiliates, state organizations and volunteers who work in communities to raise awareness and provide support and education that was not previously available to those in need.
PARC, http://www.parc-ut.org/
This is a non-profit organization with the mission of advancing the employment opportunities of individuals with disabilities.
Spectrum Lane, https://www.spectrumlane.com/
This website is owned by a friend of mine, Gina Baker. She has a medical background with years of experience with family members, including a son, with autism. She has experienced the stress up close and personal, survived extreme depression, and emerged triumphant. She offers free online classes on supporting someone with autism as well as coaching for parents.
Utah Parent Center, http://www.utahparentcenter.org/
The Utah Parent Center (UPC) is a nonprofit organization and an award-winning training and information center founded in 1983 by parents of children and youth with all disabilities to help other parents facing similar challenges throughout Utah. The UPC is founded on the philosophy that parents are full partners in the decision-making processes that direct their child’s care and programs and, as such, can provide significant support to other parents in similar circumstances.