You should write a book!
Has anyone ever told you that? Yes, of course they have. But, you don't have time to find your pants, much less write a book.
So, be a part of the YOU WILL FEEL BETTER book. YOU WILL FEEL BETTER will include stories and wisdom from families of children with diverse needs and abilities, and we want to include YOU. Your story matters.
What's the one specific thing I'm looking for right now? Well, since you asked ...
Write a letter to yourself on the day you started on the special needs journey.
What do you wish you could tell yourself on that day? What do you wish you would have known?
It could be one sentence, it could be pages and pages. Anything works. Send it via the giant purple button below. I promise not to share, post, publish, or otherwise put this out there without your written permission. This stuff can get pretty personal. I get it.
Or, if that's not really your speed ...
Share your answers to any of the questions below. What makes your story unique? Anything you'd like to share that's not on our list of questions? Great! We want to hear that too.
Answers submitted here may or may not be included in the book, and will only be included with your agreement in writing. We will also confirm with you if you'd like your real name, initials, fake name, or whatever to accompany your stories, and will fully respect your privacy. And, if you think that giving me your email address means you'll get spam, think again. I have no idea how to make that happen, so zero risk of that. But, it would be nice to know where to reach you.
The intent of the shared stories is to connect with as many families as possible. Please be honest and heartfelt. The book isn't here to judge you or to comment upon what you're sharing, and neither are we. Your story will be presented to empower yourself and others. To move us all a little closer to Feeling Better.
Note: I'm still wading through the language of "special needs" vs. "disabled" vs. "diverse needs/abilities," and fully believe that language matters. My aim is to come to the best language decisions based on conversations with actual people with disabilities. This is a work in progress. Please pardon my dust as I wade into this one, and do my best to come to decisions on language that best reflects the individuals being discussed. I believe that being a parent in this world will be a lifelong learning process for me, and I sincerely hope that I will continue to evolve the more I learn. I believe that I have a great deal to learn from YOU. And that makes me Feel Better.
THANK YOU.
See, don't you kind of Feel Better already?
Check out the questions below and submit your answers here. Or via the giant purple button above if that's your thing. It's just that easy. Nothing else is this easy, so ignore that insurance paperwork for another day, and here you go ...
• Who are you? What’s your story? How's it going?
• What advice do you wish someone had given you at the beginning of your special needs journey? What do you wish you could tell parents beginning the special needs journey? What advice do you find yourself giving others?
• Do you think that having a child with special needs has changed you? How?
• Do you work outside of parenting? Do you go to an office? How has that been? How do you make both a job and parenting happen? Have you had to leave a job in order to care with your child with special needs?
• How’s your mental state? Have you experienced anxiety, depression, etc related to your child’s diagnosis?
• Everyone preaches self-care. But, do you find you’re able to do it? If so, how does it look for you? Do you feel you’re able to find time for yourself? Do you ever get a break?
• Do you feel your race, cultural heritage, or native language has impacted the supports you have been able to get for your child, how you/your child have been treated, the level of quality of your child’s care, etc?
• Has your race or cultural heritage been an asset in your journey? Have these things made your journey more challenging? How does your culture of origin view disability and children with disabilities? How has that impacted your family and your child? How have you found support? Are there unique ways that your culture has supported and benefitted you as the parent of a disabled child? Have there been cultural barriers that have made things more challenging for you/your child?
• What is your child’s age and diagnosis?
• How old was your child when they were diagnosed? How did the diagnosis happen? Who diagnosed? Have you added diagnoses? Are you still pursuing a diagnosis? Have you ever disagreed with a diagnosis/lack of a diagnosis? Were you familiar with this diagnosis before your child got diagnosed?
• How did your life change when you got the diagnosis? Is your child visibly disabled? How has this impacted their experience/your experience?
• What did you tell your child/their siblings about the diagnosis? Does your child understand that they have special needs? How do you explain to a child that they have special needs?
• Have you had to educate others about your child’s diagnosis? How has that been? Do you think people understand it and its inherent challenges?
• Do you anticipate your child’s current levels of performance/abilities will improve, regress, or stay about the same?
• Does your child have medical needs? What have been the biggest challenges with having a child with medical needs?
• Will you be caring for the child for the rest of your life? Do you have a plan for after you are gone?
• What’s something that has been especially hard about having a disabled child?
• What’s something that has surprised you about having a disabled child?
• What’s something that you’ve found rewarding about having a disabled child?
• What’s the best thing about your child?
• What do you wish people knew about your child?
• Who has been most helpful to you in the special needs journey? Who has been the least helpful, or most challenging?
• Has anyone said or done anything kind of awful to you/your disabled child? How did you handle it? How did you feel? How did they feel?
• Do you feel like people without special needs kiddos understand what you’re going through? Do you feel they try? How has your family been? Your friends?
• How have strangers been? How does it feel to be in public places with a child with a disability? Any good or bad stories?
• What do you wish people would say to you? Friends, family, teachers, strangers in public, etc. What do you wish you could say to them? • How do you feel others can best support you as a parent of a disabled child?
• How do you respond to the “what’s up with your kid”-type questions?
• What advice have doctors given you about your child’s disability? Have they been right? What has been especially helpful or unhelpful that doctors have said? Have they ever been wrong?
• How do you know when to seek a second opinion? Have you? How do you know when to switch doctors/therapists/teachers? Have you done so?
• How do your kiddo’s typical siblings deal with the disability? What have you done to empower them? Do the siblings get along? Do you worry about your typical kids and how the disability will impact them? How do they handle it?
• How much do you estimate you spend out of pocket each year on your child because of their disability? Do you find it’s different than what you need to spend on your typical kids?
• How much have you spent on therapies, services, alternative treatments, school, support, supplies/equipment, etc? Have you been able to get any of this paid for via Regional Center, your school district, magical fairies, etc?
• Have you done future financial planning, special needs trust, will, etc? How was that for you? Any advice?
• What’s it like navigating school, Regional Center, therapies, etc?
• Advice for dealing with insurance companies, medical supply companies, state agencies, and other places that make me want to bang my head against a wall?
• Any favorite resources, organizations, websites for special needs families?
• Have you tried alternative therapies? What has or hasn’t worked? How did you find these therapies? How far have you traveled for therapies?
• Organizing it all: paperwork, emails, appointments, schedules, etc. How do you do it? Any tips?
• Have you been able to get an IEP/school plan for your child that you’re happy with? What has worked, what hasn’t worked? How involved are you with your child’s school? Special ed? Gen ed? How is your child doing in school?
• Have you worked with lawyers/advocates? What has been your experience? Any advice?
• How do you prepare your child for a new school year? Class, school, classmates, routine, environment, breaks, etc?
• Does your child spend their school day in a special day class, general education, a combination of the two, a special needs-specific school, or some other model? How important has inclusion with typical peers been in your child’s education?
• Is your child able to communicate how they feel about school? If so, what have they let you know?
• How is your family different now that you have a child with special needs?
• Do you feel you have the support you need?
• Have you found a community of others dealing with special needs? How have you found them? How do you connect with others going through this?
• What caregiving support do you have? What caregiving support would you like? Has your caregiving support been reliable?
• How has having a child with special needs impacted your marriage? Do you feel or marriage is stronger, weaker, or about the same? Does your spouse participate in childcare and tasks specific to your child with special needs? Do you feel the division of labor is fair? What things do you disagree about for your child’s care? How do you resolve disagreements about your child’s care?
• Have you been able to travel with your child? What accommodations have you had to make? What advice do you have?
• Any tricks you’ve figured out that make your life easier?
• What other questions do you have? Better yet: What answers have you found that you'd like to share?
• What else should we be discussing?
• How are we doing? Any feedback? Yep, we want that too.
First, let's just skip ahead to the good stuff. What are some moments of JOY that you, your child, your family have had on this journey? These will be popped in throughout the books, so bring on the JOY. We all need it.
Here's a little bit of what I wish I could have told myself the day we started down this rabbit hole ... They'll be okay. Better than okay even. And, every day that makes me Feel Better. Also, that it will take about 45 minutes and me singing "Itsy Bitsy Spider" to the point of exhaustion in order to get a decent photo of these two monkeys. The dog isn't in this photo. She had had it with "Itsy Bitsy Spider" at this point. Totally get it, pooch. Me too. But, I'm still gonna keep on singing ...
