• Preface: How to use this book: YOU ARE HERE
• Chapter 1: You will be on a new path: DIAGNOSIS
• Chapter 2: You will find a community: SUPPORTS and ADVOCACY
• Chapter 3: You will become a paperwork wizard: INSURANCE and SOCIAL SERVICES
• Chapter 4: You will assemble an expert team: DOCTORS & THERAPISTS
• Chapter 5: You will create a plan for your child’s education: SCHOOL, part 1
• Chapter 6: You will find the best education for your child: SCHOOL, part 2
• Chapter 7: You will spend a lot of money: FINANCES
• Chapter 8: You will lose yourself … and find yourself … and lose yourself …: FINDING YOURSELF IN ALL OF THIS
• Chapter 9: You will teach others about disability: EVERYBODY ELSE
• Chapter 10: You will create your own playbook: SPECIFICS FROM OUR JOURNEY, SO YOU CAN BUILD YOURS
• Conclusion: YOU ARE STILL HERE … NOW WHAT?
Here’s what each CHAPTER looks like:
• Personal Story: How I found what works, and what works for us.
• The Basics: Explanations of what’s what (ie: IEPs, special needs trusts, specialists, or whatever the chapter is about).
• Expert Wisdom: Top experts and professionals share their point of view.
• Letter to Myself: Parents of children with various disabilities write a letter to themselves on the day that they found out their child was disabled.
• Ask Yourself: A list of questions to ask yourself.
• Actionable Steps: What you can do right now to Feel Better.
• Templates: Templates I created to keep everything organized, clear, and easy.
• Checklist: Quick reference guide to the chapter for people like me who can’t function without a checklist.
Preface: YOU ARE HERE
• How to use this book
• Audience: is this book really for me? (Spoiler alert: yes, it is)
Chapter 1: You will be on a new path: DIAGNOSIS
Where to start with diagnosis, medical help, and immediate triage for your sanity.
• Do you think there’s something wrong? What if doctors tell you it’s fine but you disagree?
• When do you stop looking? How many opinions to seek?
• Do you need a diagnosis? Should you avoid diagnoses?
• Who can help you? Do you need a specialist, developmental pediatrician, etc?
• How and what to tell your kid.
Chapter 2: You will find a community: SUPPORTS and ADVOCACY
Who can help you? How do you find those people? Will you ever get a break?
• Family, friends, caregivers, and finding a community.
• Emergency lists to give to everyone, back up plans for your back up plans.
• Lawyers, advocates, and other people you didn’t know you needed. How to find a special needs lawyer, what to ask, how to be their most organized client. And, what laws exist to protect individuals with disabilities that you should know.
Chapter 3: You will become a paperwork wizard: INSURANCE and SOCIAL SERVICES
How to figure out insurance and the maze of social services and maybe even have a little bit of a sense of humor about it all.
• Private insurance, disability insurance, etc.
• What might be covered or your child with a disability: prescriptions, therapies, specialists, diapers, equipment, etc.
• Lists of who to call, what to ask, how to get the thing.
• Medical supply companies and how to work with them.
• Prescriptions: check your expiration dates, check it when you pick up at the pharmacy, what to bring with you, what to have at school, etc.
• Letters of medical necessity, denial letters, doctor letters, etc.
Chapter 4: You will assemble an expert team: DOCTORS and THERAPISTS
How to find the right doctors and therapists, and how to get the most out of your visits.
• What doctors do I need? How do I find the right doctor for my child? How do I know if a doctor actually knows how to treat my unique child?
• What therapies are available? What do different therapists do? How do I find a therapist? Will the school provide that?
• How and when to break up with a therapist or doctor who isn't the right fit.
• Specialized care, including feeding tubes, specialized diets, and epilepsy.
Chapter 5: You will create a plan for your child’s education: SCHOOL, part 1
Finding the right school and creating an Individualized Education Plan (IEP) for your child, including supports, services, and goals.
• What are my options for school for my child? How do I find the right school?
• What’s an IEP? What should I expect at an IEP meeting? What school supports are available? How do I write goals for my child?
• You’re going to have to fight. Here’s how to do it.
• What happens if I need to go beyond my school to fight for services?
Chapter 6: You will find the best education for your child: SCHOOL, part 2
Your child is in school. Congratulations! What now?
• How to track progress, therapies, goals, etc.
• How to set your child up to succeed at school. Letter to your child’s teacher, support staff, classmates every year.
• How to stay connected to your child’s school/teacher/classroom.
Chapter 7: You will spend a lot of money: FINANCES
What you need to know about the finances of having a kid with a disability.
• How much more does it cost to have a disabled child than a typical child?
• What’s worth spending the money on? What’s not?
• What if I have to quit my job in order to take care of my child? Is it realistic to think I can work full time (or part time) and still parent a kid with a disability?
• Is there help out there?
• Future planning specific to special needs: special needs trusts, estate planning, wills, directives, making a plan for when you’re gone (guys, it’s not a depressing topic, we’ll all be gone one day, so why can’t people talk about it?).
• How do my child’s finances impact their government services?
Chapter 8: You will lose yourself … and find yourself … and lose yourself …: FINDING YOURSELF IN ALL OF THIS
You were a person before all of this happened. Now what?
• The myth of self-care: when your To Do list becomes your life.
• Mental and physical health for yourself.
• What you can do when you don’t feel like doing anything.
• Going out in public and doing fun things with your family: it’s not like it used to be or like you imagined … now what?
• Hi Dads! I see you out there. Here’s some stuff for you.
Chapter 9: You will teach others about disability: EVERYBODY ELSE
From your spouse, to your family, to your friends, to strangers, turns out you have to balance a lot of people and a lot of expectations – here’s how to get clear on yours.
• Your spouse/partner/marriage and the impact that having a child with a disability can have on this relationship. Division of labor, creating balance/equitable vs. fair, getting breaks, etc.
• Typical siblings. How does having a sibling with a disability impact them? What can you do to look out for them? How will this shape who they are? What expectations should you place on them? What expectations will they place on themselves?
• Family outside of your home. Does your family get it? What if your family doesn’t show up in the ways you would have expected? How can family best support you?
• Cultural considerations. Has your culture shaped how you view individuals with disabilities? Has it impacted how people respond to you/your child?
• Friends. What’s it like having friends in the special needs world versus totally outside of the world? How can friends best support you?
• Strangers. Some are awesome, some are awful. How to arm yourself for all the things, prepare yourself to be out in public with a child with a disability, etc. How to handle when people are staring at your kid. Adults vs. kids. My kid is so noisy. Always.
• For friends, family, and allies: How to genuinely support parents of children with disabilities, their family, and their children. What to say, what not to say, how to offer help that they actually need.
Chapter 10: You will create your own playbook: SPECIFICS FROM OUR JOURNEY, SO YOU CAN BUILD YOURS
There is just so much. And you’ll never know it all. Here are some specific things we’ve learned from our journey that I spent way too much time figuring out.
• Creating a file system.
• Emergency planning, lists, contacts, etc.
• Vacations, what to pack, how to leave the house.
• Equipment and random helpful stuff you’ll end up buying, handicap placards, funding sources, and all sorts of other things – like service dogs!
• Representation matters: Where to find positive representation of people with disabilities.
Conclusion: YOU ARE STILL HERE … NOW WHAT?
• Where to start.
• How to Feel Better.
• Stories from adults with disabilities and parents of adult children with disabilities.
• The future.
• Letter to Myself: Kelley Coleman
Remember earlier when I was talking about the book and my journey and how I thought it was just going to be awful? That's because I didn't know people with disabilities. I didn't know what life would be like. I had some story in my head that wasn't based on anything real. This is what my story is based on now. Look at this photo - at the smiling kid, the amazing dog, and those adorable red pants that have actually been laundered. Does this look awful to you? Yeah, me neither. For all of the hard that's not going away, there's also this. And, yes, this photo was taken in the neighbor's yard when they weren't home because my son likes to sit on their planter. And I let him. Every single time. The dog is a good sport. And a great lookout.
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