It can be overwhelming and scary for parents to not only find out what is wrong with their child, but also get the treatment and support needed. This process can take years, with parents growing increasingly frustrated, as their child’s case appears to be falling through the cracks. Many parents find it intimidating dealing with medical professionals who seem to speak a different language.
‘Your Child’s Voice’ will empower parents of children with mild to moderate disabilities be the voice for their child. Too often parents are left on their own trying to navigate a complex system of diagnosis and treatment for children with special needs – especially children with less obvious needs. Drawing on the author’s experience as a patient advocate and ongoing journey of getting support for her own son, this book will include personal stories of fighting to ensure his file didn’t get lost in the system, the challenges of getting support in school, getting the tests needed in a timely manner as well as exercises and checklists to help caregivers prepare for appointments and ask for help.
表中的内容
Preface xiii
Introduction xv
1 See the Big Picture: Understand Your
Child’s Needs 1
1. Start to Think about Your Child’s Support Team 1
2. Identify Your Case Manager 4
3. Establish Your Medical Team 9
4. Potential Tests 10
2 The Diagnosis 15
1. Getting Organized 17
3 Get Support 19
1. In-School Support 21
2. Ongoing Communications 30
3. Navigating Waiting Lists 35
vi Your Child’s Voice
4 Identify Your Family’s Needs 39
1. Time with Each Individual 39
2. Date Nights 41
3. Create a Support System 46
4. Connect with Other Parents 51
5 Dealing with Roadblocks 57
1. Advocating versus Bullying 65
2. Knowing Your Child’s Rights 66
3. Children’s Needs versus Adult Needs 72
4. Accessing Support 73
6 Find the Right Therapy for Your Child 75
1. Family Connection 78
7 Share Your Story 85
1. Community of Support 87
8 Giving Back 93
1. The Value of the Positive 96
9 Final Thoughts 99
Download Kit 101
Exercises
1 Looking at the Big Picture 2
2 Questions to Ask Your Case Manager 6
3 Setting up Your Medical Team 11
4 Developing the Case for an Educational Assistant/
Teaching Assistant or Additional Support 31
5 Asking for Help 54
6 Finding a Therapy Fit for Your Child 79
7 Annual Review 83
关于作者
Cynthia Lockrey’s professional experience includes being a newspaper editor, magazine writer, corporate trainer, conference speaker, patient advocate, university and college instructor, community engagement advisor as well as public relations expert with over 20 years of experience. Her resume includes winning a Canadian Community Newspaper Award, three IABC awards and accolades for her conference speaking as well as corporate training.
She has been a newspaper editor, magazine writer, corporate trainer, conference speaker, patient advocate, university and college instructor, community engagement advisor as well as public relations expert with over 20 years of experience. She has won a Canadian Community Newspaper Award, three IABC awards and accolades for conference speaking as well as corporate training.
After her son was born, following a difficult pregnancy and traumatic birth, she spent three years as a patient advocate, serving on the perinatal health committee at London Health Sciences Centre in Ontario. Through her work on this committee, she was able to provide a patient’s perspective on maternal health, labour and delivery and neonatal intensive care (NICU) at the hospital where she spent six weeks in antenatal and another two weeks in the NICU with her son. She continues to be an advocate to ensure he gets the support and treatment needed, which is an uphill struggle in a medical system that doesn’t recognize the unique needs of children, and the education system is challenged to support children with lesser known conditions.
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