Despite all of the scientific advances and medical knowledge achieved for children’s mental health and families in the last decade, there are many areas that medical science has not addressed. Some of these areas are in fact the very issues that parents and families find most challenging, once their child has been diagnosed, whether it being finding "the right doctor," discerning among competing information sources, determining what information is factual vs. false, obtaining necessary support from schools, handling stigma and blame from friends, spouses, and others, or even understanding when your child's doctor or therapist is not fully "up to speed" with the latest scientific information, and one needs to seek out a second opinion. Doctors, therapists, teachers, and others are often ill-prepared to help parents address these challenges, unfortunately.
However, many parents have learned critical lessons about how one manages these difficult challenges, balance life, career, and their children's healthcare needs, including ensuring that their children get optimal healthcare and all the other supports parents and families need to function well, despite having a child with significant behavioral and emotional challenges. These hard-fought, hard-won lessons, known only by expert parents who "have been there," can and should be shared with other parents to ease their way through this difficult period. Similarly, such information also needs to be shared with doctors and other healthcare professionals, who often fail to understand that the diagnosis of ADHD, depression, or bipolar disorder has profound effects on parents and families, just as bad as the diagnosis of pediatric cancer. Parents must grieve, work through a sense of blame and loss, and slowly gather strength to move forward for both themselves, their child, and their family. To address this problem, REACH Institute President and CEO Peter S. Jensen, M.D., has edited a series of 4 books focusing on ADHD, autism, bipolar disorder, and youth depression, authoring 2 of these books (ADHD, depression). The series is intended to help parents identify what they need to do to “make the system work” when they have a child with a particular behavioral, emotional, or learning problem. The first 3 volumes, “Making the System Work for Your Child with ADHD (Peter S. Jensen)," "What Works for Bipolar Kids: Help and Hope for Parents (Mani Pavaluri, M.D.)," and "Getting the Best for Your Child with Autism: An Expert's Guide to Treatment (Bryna Siegel, Ph.D.)," are available from Guilford Press. A fourth book on teen depression is now in press, "What Your Child’s Doctor Can’t Tell You About Teen Depression," (P.S. Jensen & E. J. Thomas), Free Spirit Publishing, due out in early 2012. In each of these 4 books (plus a 5th one in draft, focusing on children with vision, hearing, or intellectual impairments), parents give practical but powerful but practice advice, sharing their own experiences with other parents of “what it takes” to make everything work, so that the child and family achieve their optimum potential. In each book, the book’s author(s) work with experienced parents across the country to determine what are their “secrets to success,” and what the critical lessons in life they feel need should be shared with other parents. In addition to the expert input of Dr. Jensen and his author-colleagues, each book incorporates experienced parents' answers to the following questions: What was the hardest thing for you in accepting your child/teen's condition? What has made the biggest difference for you in learning how to handle all of the problems you and your family have had to face as a result of your child/teen's condition? Schools and school systems: Did you have any particularly challenging experience in the schools pertaining to your child/teen's condition? What happened? If things are better now, what did you have to do to make things change? Getting Good Information: What happened along the way as you were struggling to get an accurate diagnosis? What kinds of mis-information or bad advice was pushed on you? What has been the best advice you have ever received, pertaining to the overall challenges of dealing with your child/teen's condition? The Medical System: How helpful were doctors and therapists in your child’s diagnosis and treatment? What were the biggest problems you encountered? Did you ever feel blamed? Have you changed doctors or therapists, and if so, why? How many times? What kinds of obstacles have you encountered in getting your child/teen's care covered or reimbursed? What strategies have you used to address these problems? What has worked, and what hasn’t? Have you had to switch companies? To get paid, has your doctor had to resort to filing the claim under some label other than condition? What strategies have you and the doctor used to solve some of these problems? Have you had to apply for any kinds of exceptions? How have you done it? Stories of Outcomes. Home Life, Families and Friends: What particular problems have you had to face from family members and friends in their accepting you and your child? Did anything really make a difference and turn things around? How has your child’s condition affected your relationship with your spouse or other children? Strategies that work with your child: Have you found patterns of communication with your child that are especially effective in encouraging his/her positive responses? What have you discovered that are the keys to fostering improved self-esteem for your child? Lifestyle Changes: Have you had to make major lifestyle changes, such as moving to find good care or schools for your child, changing jobs, quitting work, etc. in order to manage your child’s problems? What happened? If you could give a single point of advice to a new parent with a child with condition or other learning challenges, what would it be? What is it most important for them to do? What should they be on the lookout for, or be careful not to do? And lastly, is there any brief story, encounter, or something that you did or that happened to you that you can tell me, that I could pass on to other parents that might help or inspire them? The first book on ADHD (see above) includes the hints and helps from over 80 parents who have a child with ADHD, imparting their “life’s lessons learned” to other parents of children with ADHD. Additional books in the series (currently underway) focus on child/teen depression, autism, learning disability, anxiety, aggression/conduct problems, and bipolar disorder. The bottom line is that parents have a lot to teach other parents, when they have a child with various medical, behavioral, or emotional disorders. Sharing this information, and getting new parents into the “driver’s seat” so that they can act on this information is the challenge. For information on additional strategies, methods and examples that can be useful to parents, see the following: |
